It’s All Change

I was considering restarting Blogging this winter. An overactive mind may be helped if I disgorge some of the rubbish that swirls around my brain in the evening.

But and it is a very BIG BUT I am finding it difficult to find my way around the basics. I don’t think I'll be able to use my iPad (which I am now) due to it’s limited on screen size. Therefore I think it may be better to fire up the desktop.

I have enjoyed looking back on some very old posts. Although we went through some hard, sad and exhausting times. I had forgotten how often some things struck me as funny. It has been good to go back and remember now how often we both had the giggles. I have forgotten so many things over the last few years.

 I shared this post with MM on a good day - it hit his funny bone . . .
https://colyfordcross.blogspot.com/2010/01/back-to-fitness.html and it’s made me laugh at the memory. It’s been a good reminder too of how many online friends I made and wonder how they are now. I must check up on some of them this winter. Find out how life is treating them now . .
Unlike some other  posts one of the links still work . . .

Bereaved Widow

I find it very hard on reading my previous post to believe that within a few days MyMan, Keith, was admitted to RD&E hospital Exeter on Sunday 31st July. Never to come home again; he died on Friday 12th August.

When the Going Gets Tough, the Tough Get Blogging

The going is very tough now.  I intend to reactivate this Blog. Everything I have read and researched on dementia over the last 2-3 years suggest that a journal to record symptoms, medications, cognitive issues and behaviour will be a useful practical record.

My main worry is, besides it being a safe anonymous way to 'vent' is whether, or how, I will find the time. Or, more importantly, the mental and physical energy. 

Feeling Guilty

I've been sounding off about MyMan this afternoon. He has been in an unbelievably morose mood, fretful and aggressive. Now he is fast asleep. I've been able to sneak off and do several jobs that he promised he would see to. Vacuuming living room, cleaning car windscreen before it rains (to clear it of greasy smeary deposit) and to rearrange bathroom cupboards.

Sat down with a cuppa and read a couple of blogs. Feeling guilty again as so many things here sound familiar. I think MyMan may have vascular dementia. The Eye Consultant told us he has some areas of ischaemia showing on his MRI scan. We'll know more when we attend Neurology clinic again in November

When we initially attended the Neurology appointment MyMan wanted me to be there only in the capacity of note taker. He was in an independent mood. It was a very unsatisfactory appointment as I was wrong footed from the word go. MyMan failed to say who I was as I trailed in after him or to ask if it would be allright for me to accompany him. I knew then he was 'struggling' before he'd even started. The consultant ignored me and asked him "who's this?" reply "my wife";  no explanation of carer role or the need to listen in due to his appalling short term memory.

The consultant appeared to have made up his mind before he even asked MM any questions on his symptoms. Neurologist is convinced that he has clusters of different types of migraine (many without headaches) one after the other. All leading to the light sensitivity, sight problems, sound over-sensitivity, smell/taste problems and poor sense of balance. I did ask, as we'd agreed on this beforehand, whether any of his symptoms could be due to a form of dementia. The consultant was abrupt to the point of rudeness when he said not and I felt quite cowed for asking.

So cowed in fact that I failed to mention the other baffling symptoms that worry me.

In the end he recommended that MM increase Pregabalin to a much higher dose to reduce pain, improve sleep and hopefully halt the continuous cycle of migraines.

As it is we are now almost a year on and rather than any sign of improvement he is worse. We are due to go to see the family doctor again But this time we will go with armed with a long list of the symptoms he has and ask the Dr whether the neurologist would still consider everything be due to migraines.

Adopted Angel

Dear Cats Protection,

Just a short postcard from my new home. I think I will be quite happy here once this heat wave is over and I can venture outside to explore. As it is all the windows are locked on trickle. Phew!! I've examined all windows intently but however thin I am there's no way I can squeeze thro any of the gaps.

Meanwhile I keep the 'hoteliers' on their toes by finding new hiding places. The top of the tall bookcase was the best. I knew they wouldn't find me for AGES because of the amount of dust up there!

The beds are comfortable (I have 3 favourite easy chairs, a cardboard box and a computer chair). The food is really good - I am enjoying 3 meals a day. I hinted that I would like some veges by chewing a very healthy houseplant. I've  stopped doing that now there a few peas mixed in with my lunch.

When it's not too hot I enjoy a few cuddles with each of them - in turns. We usually get together before breakfast, after lunch and in the evening. But I take several siestas; I take my longest daytime nap (3hrs)in the bottom of the airing cupboard - where it's dark and private.

The view from my favourite chair (it used to be HIS chair) is of gulls, rooks, pigeons, squirrels and a very large black cat. I hurl challenges to them all through the glass telling them I'll be after them as soon as my new catdoor has been fitted. Until then I try to keep fit by running 100m sprints 2 or 3 times a day, leap a high jump and hurdle obstacles. They have a sense of humour because I hear them laughing when I'm putting myself through my paces.

I think they have strict rules here. I made a faux pas on my first day; I jumped up on a kitchen worktop. He 'snitched' on me. She then hissed at me "Ssssssstop" so I jumped down. I've not been up there since. I KNOW when I'm being told off. We are used to each other now and haven't been told to "Ssssssstop" for ages. As I said, I think I will be happy here.

Love to all from
Angel

Carer Watch Website Enforced Shutdown

So what happened to Freedom of Speech  & Innocent until proven guilty?

http://carerwatch.wordpress.com/2011/08/21/carerwatch-discussion-forum-taken-down/#comment-1456

February 9th On checking this link I now find the web site On http://carerwatch.wordpress.com/ is fully active

New Blogger on the Block

A big welcome to the Earl of Bootyopia who's dipped a toe into the Blogosphere with this post which is well worth reading. Please pop over and say Hi!

Springtime

After a rather dreary winter full of snow, woes and viruses I've returned to my Blog to fill you in with a short update.

MyMan has been no better. Pain and depression as bad as ever. Occasional glimpses of the Man he used to be pop to the fore but rarely last long. On my birthday in February all my family were flying from all corners of the world to converge on Sri Lanka for a wedding. I was stressed and anxious at having all my precious eggs in one basket. In the event they all returned safely. To provide a distraction at this time I booked a First Class train seat to East Croydon and a B&B at the Selsdon Park Hotel for along weekend in April.

I met with Kay who came down from east Anglia for a night. You may remember that Kay and I had a disastrous trip in 2008  Rather than terminate the friendship I continued to keep in touch but am now much less inclined to consider her feelings above my own. We are not as close but still able to enjoy each others company.

The main difference is that pre 2008 to give her pleasure I would have strained every sinew to  visit and stay with her. I find it stressful leaving MyMan. Would prefer to spend time away from home with my family rather than friends. But I would have made the effort. A 6 hour journey is no easy undertaking under the best of circumstances. So I am unlikely ever to make the effort to visit her again.

Over the last 2 years she has invited herself down to visit us. And rather than pay for her to stay at a nearby B&B I now leave her to sort out her own accommodation. I have forgiven but not forgotten. I am hardened.

During a phone chat Kay mentioned that we hadn't seen each other in 2010. I'd not been aware of the lack. She was trying to sort out if we could arrange a visit. I suggested that as I was on a visit to family while booked in at an hotel. Would she be interested see if it could a suitable venue for a half way meeting place. she did and we both arrived on the Friday afternoon. It was successful 24 hours together. We've agreed we'll try and fit it in on a regular basis. Perhaps a long winter weekend to include Christmas shopping trip to Croydon stores.

After Kay left on the Saturday evening I met very briefly with Merry Weather. She is a delightful lady. My only regret's we only had an hour together and I was inclined to be very tired by then. Sunday I spent the day with family. So I had the best of both worlds: Family and friends.

The best part was that everytime I phoned MyMan he sounded upbeat. I didn't probe and took it at face value. Time enough on my return home to hear of all the problems he faced without me. And the effort he made to sound cheerful. I told him how much I appreciated it.

The Good, The Bad and The Ugly

The Good the Bad and the Ugly - a year end review.

The Good:

1. Winning a long drawn out compensation battle with Equitable Life via the FOS
2. Award of continuation of DLA & Mobility Allowance
3. My one week break away to see family after my bowel investigation
4. My trip by train to visit family for a short weekend break away
5. My nephew's wedding and a lovely 3 nights at a Boutique hotel in Richmond, London
6. Bridge Club and lessons
7. Family, friends, new PC, Apple iphone, wine and laughter
8. Re discovering the art of losing oneself in fiction
9. Hypnotherapy sessions to help me get in touch once again with my optimistic self (gave me the energy to get on, do more, think less and not feel guilty for enjoying life while MyMan is so depressed)
10. Making plans for 2011: more short trips away by rail to meet old and new friends
11. Planning to try and get MyMan to London via rail up so that we can explore where I would like to live - nearer to family
12. MyMan is due to attend a 6 week Pain Management course. I hope it will improve his attitude to coping. Now we know this IS as good as it gets we need to move on.

The Bad: 

1. Many hospital appointments with MyMan at the Pain Management Clinic (raised then dashed hopes and the time spent waiting around)
2. Day Case Surgery - 4 days for him and then 1 for me
3. MyMan attending a Back to Fitness course - slowly building strength up but no improvement pain wise
4. Depressing time when completing application form for continuation of DLA (took us 8 weeks to work through it a bit at a time)
5. The sudden onset of Diabetes following his sacral iliac joint steroid injections
6. Making yet more adjustments for a health problem
7. The lack of effect following Botox injections
8. MyMan's increased depression following each unsuccessful Pain Management intervention

The Ugly: 

1. MyMan rarely goes out without me and I still crave some solitude at home.
2. I often need get away from MyMan to feel happiness; his negativity is so very draining.
3. I still feel home is no longer the refuge it used to be
4. I miss the freedom to invite friends in when I like.Any entertaining of friends needs to be planned well in advance. If it coincides with one of MyMan's worse days then I feel guilty and uncomfortable.
5. His anger, irritation and unpleasant manner is rarely shown openly to other people. His Dr defends him and says its down to frustration. I know. But it is so very draining to cope with 24/7. I withdraw into myself. It doesn't make for a close marriage nowadays. And I still grieve for the loss of the  man he used to be

Coping Strategies

I've been working this summer and autumn on coping strategies. My annual visit to the Dr for a BP check. I once again complained of my aches, pains and strains elicited the response that apart from my weight continuing to creep up I was healthy. When I said how hard I found it to cope at home with MyMan's moods I was told 'he's frustrated'. Well I know he is - so am I.

But if I'm healthy then what to do about my pains which now are making me so stiff I find it hard to stride out on a long walk.  Less activity is not helping me to control my weight.
I've almost forgotten how to walk naturally. In fact I'm beginning to think I think too much on how to walk. Sometimes I march freely along Sdimouth Esplanade and then think "this is so easy". With that thought 'poof' it's gone and I find my legs, ankles or hips are once again stiff and unco-ordinated.

In August I tried a few sessions of hypnotherapy. It certainly helped me to concentrate on relaxing more easily. It highlighted my need to 'focus' more. Which helped my bridge game. I became aware that whatever task I was doing my mind  was also occupied thinking of several other things. Mentally reviewing my 'to do list', worrying about MyMan or planning how to cope with a particular current problem/difficulty. I think that now I'm no longer able to share some of my minor day to day worries with MyMan I'm inclined to brood more on them rather than talk them out. The psycho/hypnotherapist gave me homework to do after each of my 3 sessions.

The first one was that I had to change my self talk to a more positive attitude. Therefore not to comment on the negative i.e my need to lose weight but that "I am slim, tall and walk easily" along with "I eat smaller portions" . The second session looked at my level of focus. I had to practice doing a daily task. To really concentrate on focusing on each and every detail of the task. I chose to clean my teeth. To focus only on brushing my teeth without thinking or planning for the day ahead.

It has helped me to think and focus on myself sometimes. I stopped dithering over decisions and made up my mind and went for it. Changed to new PC, bought myself a new bed (it's helped my aching hip joints - a result) explored rail travel, and decided to cease listening to MyMans gloomy negative views and enjoy friends' company. Regardless of his impressions of them. I've decided to follow my own instincts. And am making plans to meet up with a fellow blogger.  I try to make sure I always have some event in the near future. To have something to look forward to.

Where It All Began

I was looking back at the beginning of my Careless Carer blog tonight as I have just found another carer who has started to blog. I invited him over to mine to see if he'll get more out of blogging by networking with us Carers.

If you stop by perhaps you'll pop over to meet Just Another Carer

For me this was the beginning when I was trying to sort out how to cope. I think I have made some progress since those days. But it is still 2 steps forward and 1 step back kind of life.

Clapham Junction

I've been up to visit London for my nephew's wedding. Once again I have safely negotiated Clapham Junction. Both ways. There and back. Tired but happy.

Testing whether I can post via email from my mobile phone.

Sent from my iPhone

Letting the Train Take the Strain

It may be an age thing but this year the long journey to Surrey was very tiring. It was a sunny hot day in May and being a Friday I had many traffic hold ups. I'd left home 2 hours later than planned.Marooned on the drive the bonnet latch locked while the hood was half opened I had to be rescued by the local mechanic who didn't arrive till 8.45 a.m. I wasn't feeling at my best which didn't help either.

On my return home I decided that for my nephew's November wedding in Richmond, London I would travel by rail. I've not travelled by rail for nearly 30 years. In those long ago days days it was a train trip there and back. No changes needed and no need to negotiate the complexity of Clapham Junction. So I planned a 'trial train trip'.

The first challenge was in finding out the cheapest way to travel by train. Such a complex system. What was the difference between an First Anytime Single ticket (at £90.30 or £95)and the 'Cheapest First Class single' at £90.30? I quickly found that if I had a Senior Railcard I would get a discount. And another discount if I bought tickets well in advance of travel date.

A planned trip to see family in Croydon was arranged for the total cost of £32 return, travelling First Class with SWTrains. Cheaper than a tankful of petrol. I'd try it.

I was bored and stiff by the time I reached Salisbury an hour and a half later. I was regretting not going by car. I reminded myself that it was to be a relaxing trip and cheaper. And I have to admit by the time I arrived I was far less tired. 

MyMan was left alone for only 2 days.  Although he didn't eat any of the meals I'd left for him; existing only on soup/sandwiches (and cakes he'd bought from the bakers) I wasn't away long enough for him to come to harm through a less than perfect diet.

For my next trip I have an audio book loaded on my new iPhone and can be entertained as I watch the scenery flash by. Or I could play Bejewelled, Angry Birds or even Omar Sharif's Bridge.

Apple for Idiots

I've always been a bit sniffy about Apple products. Apple for Idiots I always thought. But I have been won over by the simple charms of the iPhone. It looks gorgeous. Well the 3GS version does. I'm not so keen on the iPhone4. I had a very good friend who was playing with one and allowed me to handle it and play with it a while. I was hooked.

I've bought myself a 3GS 32GB in white through Carphone Warehouse who supplied a walk out working service. I took them up on this offer as I couldn't find any information on which way round the SIM card should be inserted in the small tray. The wanted to sell me the geek guys help to synchronise the phone with my PC. I accepted the telephone number (just in case) but refused to pay the insurance for this service. I needn't have worried it is all very easy and intuitive to set up.

I have several handy apps downloaded - not to mention a couple of addictive games. I've loaded 3  operas, numerous easy listening compilations and an audio book and there is barely a dent in it's capacious memory.  I regularly text friends and am able to read/reply to all my emails via the phone. Not to mention the ability to post to Twitter. It's worth every penny I spent on it.

http://www.gsmarena.com/apple_iphone_3g-pictures-2424.php

A Long Eventful Summer

It's been a long eventful summer. Following on from my bowel investigations within 2 weeks I was on a long planned trip to Surrey/Sussex to visit family. I didn't feel too chipper. My innards were still a bit unsettled. I felt sad and scared. I knew by then that the polyps were of the type that could turn cancerous. And so would undergo a colonoscopy again next year. Oh well - at least I now know what to expect.

At the time of my visit my sister was grieving: she'd had an old much loved dog put down and a work colleague, who was a really good friend, had died unexpectedly. One way and another we were both for different reasons tired and in shock.

The events once again raised my anxiety levels; along with feelings of grief and sadness.

Feeling so tired we did less than usual. Eating, drinking, chatting, dozing and walking the dogs. And reading. I rediscovered the joy and solace of losing myself in reading. Fiction. Becoming lost in a tale. Escapism.

 I've always read a great deal. But of late, the last 10 years. I've been reading for research, personal development and information gathering. Knowledge is Power.

Or, rather, should that be Ignorance is Bliss? I'm certainly more relaxed now I can lose myself in a book or 3.

I realised on my return home that I spend far too much time worrying about, for and on behalf of MyMan. That life is passing me by. I resolved once and for all to get some balance back into my life.

That's what I've been working on the last few months.

The Girl With the Colon Tattoo

I'm the Girl with the Colon Tattoo . . .

It was rather a shock when I was told I had an abnormal result following my National Bowel Cancer Screening test.

I've always had a fast transit time. No constipation. No changes in bowel habits. And apart from IBS symptoms that always manifest itself during times of high stress I'd no concerns re my working innards. That was why it was a shock.

I'd had a happy Friday morning playing bridge with friends. Much laughter and a light heart was soon brought down to earth when I found an NHS letter awaiting me at home. I had an appointment at the RD&E hospital on the following Thursday to meet and talk with the Bowel Cancer Screening Specialist Nurse to check I was fit enough for a colonoscopy; GULP.

Regardless of my various aches, pains, palpitations, tension and odd periods of high blood pressure - mainly following the arrival of the letter - I was deemed fit. Even when I was sitting there frightened and anxious my BP was recorded as a 'fine' at 140/86. So I was booked in for 'the procedure' on the following Tuesday afternoon.

To starve from Sunday lunch time. Taking a Senna laxative for Sunday tea followed by 2 other laxatives for Bank Holiday Monday breakfast and again at teatime. Only clear fluids allowed from midday Sunday onwards. It wasn't a pleasant weekend. There are better ways to spend a weekend. I lost count of the number of times I sat on the toilet. about every 30 minutes just passing liquid. I'm sure I was empty after the Senna worked at 1 a.m. The double portion of Picolax had an easy time of it.

I was told that I could have sedation for 'the procedure'. If I had sedation I had to be sure not to do anything for a full 24 hours after. Not to sign any papers (what about my Last Will & Testament?). I would need someone to drive me home from the hospital.

That was a big problem. MyMan has not been able to drive much over the last few weeks. His sudden onset of diabetes meant his eyesight has kept him off the road. Now that his sight is returned to normal his back is in such a bad way I wasn't sure he'd be fit enough to get me home. Friends were on holiday. Or car less. I didn't much like the idea of a taxi. MyMan raised his game and promised to get me there and home again.

I opted to undergo the 'procedure' without sedation. I was told I could use gas and air and if it became too uncomfortable I could change my mind and request a sedative. I knew - and was right -that MyMan once he'd got me there and back home again would more or less collapse in a heap. I couldn't afford to be sedated.

I am happy to say that I managed without any intervention at all. I concentrated on relaxation methods. Painful prods, I told myself were just 'sensations' and nothing to worry about. Turning the corners were the most uncomfortable sensation. Not to mention the amount of air inflating me till I had visions of myself floating away like a big airship. Mrs Blimp.

Polyps were found. Eeach in turn, was cut, caught, removed, cauterised and then a clip or a tattoo applied before moving on to the next polyp. 6 in all; 3 small; 3 large. Overall the procedure lasted about an an hour and quarter. All the air pumped into me started to make me feel nauseous. But after a rest in recovery unit I was given a very welcome cup of tea. And offered toast. By this time I felt I wasn't bothered if I never ate again. But they wanted me to eat one biscuit at least. I forced a digestive down.

On the way home I deposited the cup of tea and digestive biscuit in a layby - outside someone's house. Before we drove on I insisted MyMan wash it away with a bottle of Evian water.

Good Friday

It's 4 a.m - .Good Friday morning. As usual when I've been over anxious I'm unable to sleep through the night. I've returned to roaming the house in the early hours. A mug of hot milk and a couple of oat baked biscuits along with a paracetamol usually help me to get another couple of hours before the start of a new day. But the sleep I have is not as deep and restful as a good 'proper 7 hours'. My dreams are edgy and fear filled. I'm often running, in a speeding car or falling down a steep flight of stairs.

I seem to be having a recurring dream where I am trying to make my way 'home'. To our first house in Gloucestershire. I am carrying heavy loads up steep hills. Trying to figure out whether to take the shortest (but steepest) or the less steep (but far longer) route home.

The place where from my late 20's to mid 30's I used to drag shopping home from Stroud. Lugging heavy carrier bags up a long steep hill for nearly 2 miles. Looking back I realise that MyMan didn't think how I managed to get all supplies (for both of us, a cat and a dog and cleaning materials) home unaided. I can't believe how I just accepted this. A lack of reliable bus service along with high fares meant I would walk to and from town to shop 3 times a week. Once a month a friend would take me along to an out of town supermarket.

Now, on reflection, I believe this contributed to the RSI problems I suffer. An injury in my mid back that affects me from my shoulder, through to my pelvis and thigh. Today I can hardly carry a loaf of bread in a bag but have to hug it close to me.

At the time ( mid 1970s) I didn't drive. We only had one car - MyMan's. He needed it for the daily commute to work near Tewksbury. I used to save the weekends as his leisure time and not request assistance with shopping which he always hated. Even then I put his needs above my own.

He is frequently thoughtless and selfish. But I have partly made him the man he is today. Now I am trying to stop and think of myself, my needs; far more than I have ever done so in the past. Neither of us finding it easy to adjust to the people we are now.

I mentioned my recurring dream to MyMan. He agreed; "it was a long hard pull" up the Old Bisley Road out of town. I asked what he meant as he'd never walked it. For him walking was a ramble in the countryside not pounding footpaths or pavements. "Well, I always had to select the lower gears and just hope I didn't meet the bus labouring uphill". Hmm I didn't realise that it was just as tough for him too!!

Insulin

MyMan's first medication for Diabetes was Metformin gradually increasing the dosage until he reached 2x twice a day. But his blood glucose levels were not coming down fast enough to please the nurse. So he was started on Insulin. Using a pen device he injects a mixture of medium and long acting insulin each night. Slowly increasing the units injected.

For the last couple of days his reading has been down as low as 7 early morning and under 10 during the day. But the nurse felt that he could take it a bit easier this week and take time to adjust to this level before they decide whether the units should be increased.

In some ways I'd prefer them to remain slightly high. I'm so anxious that he'd have a hypo attack during the night. That I wouldn't know till the next morning. 2 or 3 times a night I creep up to listen to his breathing to reassure myself that he's OK. But what would the breathing of a man lapsing into a hypo state sound like?? I don't want to make him more anxious than he already is. I'll have to find out the answer some way - discretely.

I've read many books on the subject. I have altered his diet - just a a little - to include more carbs - low GI ones. I'm pleased to see that his favourite homemade cake recipe is in the Diabetes UK Recipe book. So I will start baking again on a regular basis then he can have a small weekly treat.

He has only read one simple book on the subject. He does not want to know how to manage this illness. He has run through a variety of emotions; mainly anger - on a daily basis. With ' Time' I assume his attitude will change. He doesn't like me telling him what is best or not to eat. He wants what he has always eaten. But I refuse to indulge his craving for lots of cheddar cheese, milk chocolate, cakes, puddings and chocolate biscuits until he knows how it may affect his glucose and cholestrol levels. At least he has always eaten a healthy diet full of fruits, vegetables, salad, fish, oats and fibre - it's the extras he needs to know about so that he can make an informed choice.

As it is at the moment I'm the wicked fairy removing all the things that make his "life worth living". (So it's not me then that gives him the incentive to get up in the morning!)

He knows he's being unreasonable in taking it out on me. He feels guilty that I'm on chaufferuing duty again. He has told the DVLA about his medical condition and has been told he can drive. But as his eyesight is variable from day to day I'm on taxi duty until further notice. He made a lovely gesture and bought me a huge bottle of my favourite handcream on the way home from the opticians yesterday.

Bloody Ups and Downs

So my birthday hadn't quite turned out as I'd hoped. Maybe everything would look better in a few days. But it didn't. There wasn't much sign of improvement pain wise for MyMan. In fact he appeared very ill and weak. Then he developed a sore throat, a croaky voice and an insatiable thirst. With the local virus he felt unable to exercise to test out if he had any signs of pain relief.

Then worryingly his vision became even more blurred than usual. Obviously not a virus. We had to move the chair 4' closer to the 42" TV as he was unable to see it properly. I thought he should go to see the optician as soon as possible. His sight was so bad I returned to full time chauffeur duty.

Meanwhile I searched the Internet, Googled "adverse reactions to steroid injections in sacroiliac joints". Nothing that explained his sudden onset of new and/or additional symptoms.

With an appointment to see the optician on Wednesday morning he also arranged to see the Dr again in the afternoon. The optician was surprised at the sudden deterioration in his sight. Thought it was caused by a 'rare complication ' to the steroid injections.

Later that afternoon the doctor diagnosed Diabetes. A blood glucose level of 28. Since then our feet haven't touched the floor.

A Birthday Treat . .

With no chance of a lie in and then lunch out I decided to console myself with a little retail therapy while MyMan was in hospital having steroid injections in his sacroiliac joints.

I had to take him to the hospital for 8 a.m and be ready to receive a call to go and collect him at 'lunchtime'. Plenty enough time for a spot of 'cheer myself up' shopping. We left the house at 7 a.m with no more than a cup of hot water. He had to starve in case a general anaesthetic was administered. It seemed cruel for me to eat while he was starving So I didn't.

At 8 a.m as soon as I'd deposited him at the hospital I went in search of a cuppa and a bacon sandwich. The only trouble was I didn't know anywhere that opened that early. So I went to a 24 hour Sainsbury's superstore. I had to walk around for half an hour as the cafe didn't open till 8.30. I was beginning to shake; my blood sugar levels were very low. While I was refuelling I planned where in Exeter I'd go and which shops I'd call in, making a list of my intended purchases. On the way out of Sainsbury's I refuelled the car - £40.

It was at that point my mobile rang - there is only one person who has the number of that phone. MyMan. He'd had the injections and was impatient to get home would I pick him up as soon as possible.

So much for retail therapy. All I'd bought was a cup of tea, a bacon sandwich and a tank full of petrol.

Physio Therapy

It has been a gruelling few weeks (months) since MyMan started on his course of physiotherapy. The 'Back to Fitness' course left him far worse than when he started. Each week he'd go over to Exeter hospital - an hour long journey for a one and a half hour session of relatively easy exercises. With the hour drive home again it meant he'd leave here at 8 a.m and reach home by 11.30. I loved having some time to myself. And it was good that he was becoming independent driving himself again. (Having confidence in the safety of our new car helped. Until Toyota started the massive recall that is . . .)

The whole event would wipe him out for the rest of the week. Just as he'd start to recover he was then facing the next session. Pain levels have increased and his muscles seem to be even weaker. Friends have been shocked to see that he has great difficulty climbing stairs. And his concentration, focus and ability to string more than a few sentences together have deserted him. So far by being quiet and reclusive he has hidden how weak and mentally fragile he has become. To socialise once in a while he's been able to don a mask of 'normality' for a couple of hours. The last few weeks he's been unable to do so. Suddenly everyone is realising the shocking truth. He is not the man they used to know.

Tomorrow (my birthday) he is to go to very early to the hospital once again. This time he is to have steroid injections in the sacroiliac joint(s). Neither of us know what to expect. Our hopes were raised over the last procedure. If this doesn't help he feels unable to continue with any more treatments. He believes that 'enough is enough'.

Caring With Confidence

I would like to draw your attention to this new initiative funded by the NHS. It is a free knowledge and skills based learning programme. Some areas have group meetings. It appears to have limited groups in the South West region - Somerset. No wonder parts of Devon & Cornwall are still referred to as 'the withered arm'. (There was not so much money to be spent on the west which had to soldier on as best it could - left to wither away!)

I suggest you explore this link and see if Caring with Confidence would be of any help to you.

I like to meet and share problems in a group when I can but with time being such an issue it isn't always easy. Another problem I find is just how bone wearingly tired being a carer can be. It is so hard to explain to someone who hasn't experienced it. I often wonder whether it is a low grade form of reactive depression. Does anyone else have any views on this?

Back to Fitness

Besides the physiotherapy sessions MyMan has also been entered in a Back to Fitness programme. Over a 6 week period he along with a class of 5 others is undergoing an hour long exercise and muscle toning programme run at Wonford hospital.

Last week he boasted that he had used dumbbells weighing 66 lbs. I said incredulously - "surely not. Don't you mean 6 lbs?" But he insisted it was 66lbs. "But that's about 4 stone - it can't be that" Again he was definite. He'd seen the weight impressed on the dumbbells with his own eyes - demonstrating this by lowering his spectacles down his nose to see properly - and telling me that 'bloody heavy they are too'.

I told him I still wouldn't and couldn't believe it. 6.6 kilos by a HUGE stretch of the imagination I might manage - but not 66 lbs. Not from a man who is unable to help me carry in a bag of potatoes and 2 litres of milk without moaning how heavy it is.

This week he confessed he'd taken a closer look and it was 6.6 lbs. And, as he'd found them very heavy last week and had strained his chest muscles, he picked up the lighter weight dumbbells.

That's MyMan. Mr Atlas he isn't.

Updated: 22 January 2010

Thank you Robert for your kind comment but I feel MyMan and I are quite well matched.

New Beginnings

It is a little late in the New Year to think of New Beginnings but

"What at first may appear to be an ending, is often a new beginning . . ".

After a long drawn out investigation MyMan has accepted the Financial Ombudsman's Final Decision on his complaint against Equitable Life. It has been another battle against a large instituition. Energy sapping and a time consuming procedure at the best of times.

Now he is even more at a loose end. Still not fit enough to work. With too much time on his hands he concentrates on his low mood. Maybe once the compensation comes through, and he is able to completely cross it off his mental 'jobs to do' list, he may find some energy to get on and enjoy some aspect of retirement. He's now 65 and if he'd still been working I would have been nagging him to retire. He counts himself as sick and out of work. But with the state pension being paid I tell him he is now a retiree/OAP.

He longs still for solitude, peace and complete quiet. I tell him there will be plenty of that when he's in the cemetery.

Just When You Think It Can't . . .

Just when you think it can't get any worse than last year . . . it does.

MyMan is, understandably, very disappointed that the injections of local anaesthetic in his spine provided no pain relief. Therefore the idea of the procedure to 'burn off the nerve endings' is a non-starter. He is being put on the waiting list for an injection of local anaesthetic and steroid injections into the sacroiliac joints. To see if that will help.

Physiotherapy exercises are making him feel worse. He is slowly noticing a slight increase of flexibility. But as a result of the exercises the pain is even more intense. He is finding it more difficult to cope with just the very basic of daily living activities. Needless to say his depression is worse.

We both feel intensely disappointed. Christmas will be very quiet. No decorations. No partying. Not even an afternoon tea party. As is usual, when MyMan is depressed and unwell, I am bone weary tired. My own aches, pains and stiff joints have flared up. I'm not going to put myself under pressure. So we'll spend a long quiet weekend together. Reading and watching TV.

I can understand that when we believe that 'this is it' we slowly adjust; get used to the limited lifestyle. But with the idea of a pain free mobile spouse I had allowed my hopes to rise. I started to believe that we could get out and about together. To enjoy visiting some of the local tourist sites; of taking a trip to see family. Dashed hopes are hard to bear.

Absent Minded

MyMan often accuses me of 'making it up' when I tell him that he shouldn't use the kitchen sink when his hands are filthy. Butto only use the kitchen sink to wash his hands if he has 'clean hands' and is about to prepare food. He only gets himself cereal or a hot drink so its not as if he regularly works in the ktichen. But it seems the kitchen sink has a real attraction for him.

I tell him it is not a sink for washing hands after messing about with dirty pots in the garden, refilling bird feeders or other similar filthy tasks. He assures me he doesn't; he uses the cloakroom. I know he often 'forgets' to do so. He denies it. So I follow on behind and clean the taps and the swivel spout he touched with dirty hands. He has a stomach upset often; so I try to maintain the highest degree of cleanliness in the kitchen.

Today I heard him use the toilet. Leave the cloakroom and go into the kitchen to wash his hands. I immediately asked why. He said he hadn't. I told him I heard and know that's what he'd done. He thought for a while and finally agreed. He hadn't realised; didn't know why he came out to the kitchen; thought it was because he was probably thinking of something else.

I know that he is incapable of multi tasking but next time he walks passed the bathroom or cloakroom to use the kitchen sink I intend to go into nagging mode. BIG TIME. I've moved the hand wash out of the way - hopefully it will give him pause to wonder why. And I've erected a big notice "this sink is not a washbasin: it's for Cook's use only".

Homework on Positive Thinking

I am still trying to get MyMan to read this author's book on "How Your Mind Can Heal Your Body". I'm finding trying to motivate him a bit of an uphill struggle. He says he feels 'too ill' to read it. I'm not 100% myself as I feel a bit tired and run down. But I'm hoping he'll start to read it before his next appointment with the physiotherapist. There doesn't appear to be any lessening of pain after the injections of local aneasthetic down his spine last Friday - 13th November. I know he is disappointed. We both are.

Meanwhile I will show him this video interview to see if it intrigues him enough to want to look at the book . .

Negatively Positive

MyMan attended physio yesterday. He really dislikes having to go to the hospital 2 days running. He has another appointment with the physio in 2 weeks when she will assess his muscle strength and tone. He is being booked in for a Coping with Pain Programme which will start in the New Year. He'll be shown ways in which in can get up from the floor in and out of chairs/bed etc. Also exercises to improve posture and increase flexibility in back muscles.

She told him that he needed to be more positive in his outlook. That his negativity would not help him. I almost said "I told you so" but I refrained. I told him that I had a book and we could look at it and work on change of attitude as an exercise together. He "will give it a try" . . .

I'm trying to train him like a child or a dog. When he is in a reasonable mood and less negative I remain with him longer. As soon as he becomes grumpy, negative or aggressive I quietly withdraw and do my own thing - alone. He prefers to be with me so hopefully he'll make the connection at some point.

They say you can't teach an old dog new tricks but I'm hoping I can teach and old codger new behaviours . . .

Positively Negative

He feels so ill MyMan. His symptoms are so wide ranging and varied. A few of them are: fatigue, breathlessness, palpitations, sore throat, swallowing difficulties, extreme tiredness, indigestion, constipation, dire rear, back pain, neck pain, trembling, weak leg muscles, headaches, deafness, loss of balance, blurred vision, voracious hunger or loss of appetite. Moods swings and memory problems have been well talked about in older posts so I wont go over those again.

At the moment he is 'twitchy' and anxious. I know some of it is due to his concern that he will be 'unlucky' in that the injections into his spine will not work. Or worse, that something will go wrong and he'll be worse off than he is now. He is convinced that nothing will go right for him. I try to suggest that his negative attitude will not help him. That there is every chance he'll be pain free after the injections. The doctor told him it could last for months. But it all appears to fall on deaf ears. He goes for the procedure on Friday.

I'm trying to visualise a positive outcome. I'm working as hard as I can. I need to in order to overcome his negativity.

My Favourite Osteopath

My favourite osteopath is Tony Nevin. He was the first person I tried for manipulative therapy back in the early 1990s. I can remember how different I felt after my first treatment: balanced and several inches taller. I also felt incredibly relaxed and spaced out. It was how I imagined I would feel if I had smoked some funny baccy or chewed on a magic mushroom. Wonderful, relaxed, happy with heightened perception.

He used to tell such wonderfully funny stories too. I can remember when he first started to treat animals at the local wildlife centre. He was interviewed by BBC radio while he treated a badger. It became so relaxed it fell asleep. Tony could barely be heard above the badger's snoring.


I would go to him now if I still lived in Gloucestershire.

Zero Balancing

I'm trying to find a treatment that would not be too painful or intrusive. I used to have osteopathy or chiropractic treatment during my 50s but have not had any manipulation for over 10 years now. I always found it extremely painful. Not to mention the fact it took a good 2 or 3 days to recover afterwards.

I was considering Rolfing - I am looking for a 'gentle' treatment. I also like the idea of not having to undress. With the excess weight I've gained over the last 3 years I would feel too embarrassed. I have had reflexology in recent years which can be very relaxing but doesn't address back/neck or posture problems.

I read an article by Jane Alexander on Zero Balancing in the Telegraph on Saturday. It sounds a perfect way to try and restore my equilibrium. I may give it a try. I feel desperate today. Over the years I've had many health problems, falls, whiplash injuries and lately much stress and tension. It would be wonderful if some non invasive relaxing therapy could help. I've contacted a therapist and will let you know how I get on with it . . . or not.

Palpitations

I'm having palpitations. A symptom of stress. I'm stressed as MyMan is once again exhibiting signs of memory problems and an aggressive attitude. I still think it seems very much like a dementia problem. He also seems distressed at times and 'feels there is something wrong'. We may have to go back to see the psychologist for another session.

All being well I'll still be able to go to the training day tomorrow.

Ways to Feel Good

It has really surprised me just how long it has taken me to catch up on my '3 weeks sick leave'.
We are still busy with hospital appointments. MyMan is about to attend physiotherapy. He now has a date set to attend day surgery at the RD&E hospital. He is having injections into his spine to see if it will help with his chronic back and neck pains.

I have 2 'training sessions' set for next week. [a] a training day arranged by Devon Carers' Link on "Ways to Feel Good" and [b] "Depression - How to Help" a one hour talk arranged by my local Mind Carers' Support Team.

They both seemed like a good idea when I signed up to them. However, at the moment one of the "Ways to Feel Good" would be to have a relaxing day at home, with a good book, my feet up and a glass of red wine at my elbow.

Playing Catch Up

I'm still struggling to play catch up with all my chores. Bad timing - meant that the decorator came in to refresh the hallway with some basic painting. It looks clean and fresh now. It hadn't been painted since the day we moved in 1999 and it needed doing then! It was a struggle to clear all the bookcases in readiness and of course it all had to be put back afterwards. Just at a time when I still felt weak and useless.

I still feel very tired. I've been told that I shouldn't underestimate the physical effects of the demands placed on me by caring for MyMan. That his depression is sapping my strength too. Apart from the extreme feeling of bone wearying fatigue I have a positive attitude. I'm just frustrated that I never get all that I want to do done each day. I get the 'must do' chores done and am having to leave the 'would like to do' list undone. But it is the latter that are fun, interesting or sociable .

At the moment I'm trying to get myself organised for a Macmillan Coffee morning. Several weeks ago October 1st seemed to be a good date for a charity coffee morning. Now I'm not so keen. I hope the sun doesn't shine that day. The last thing I want to see is all my cobwebs glowing in high definition sunlit glory.

Update: 13th October - All who came to join me for coffee and cake said they enjoyed the chance to socialise for a good cause. I've just paid a cheque for £90 into the fund.

Too Ill To Care

It has been a very eventful week. Following on from the flood. I ended up in bed with a dose of gastric flu. I only left my bed to visit the bathroom, many times. In three days I didn't eat. I did nothing much beyond sleep or listen to Radio 4 or the World Service, which played continuously in the background.

My Man fed himself on canned soups, baked beans or spaghetti on toast. On the few occasions that I did surface to go to the kitchen for a glass of cooled boiled water. I would see that he had used practically every saucepan we owned. I was relieved that I did not have to worry about the mounting mountain of unwashed pots and pan. He told me that he would do the washing-up. I was not to fuss, or worry about it.

I finally surfaced on Sunday, but felt quite weak and nauseous. My appetite did not pick up until the remnants of the used saucepans had finally being cleared from every kitchen surface. It has taken a long time to return to normal, whatever normal is. After spending so many days lying down or sitting weakly in a chair. my back muscles are protesting. I feel stiff and old.

If I ever wonder what I do with my time every day. the evidence now lies in front of me. As soon I was able I picked up a cloth. I cleaned the kitchen sink; the bathroom basins and the toilets. Dusting, hoovering, tidying, nothing has been done. At the moment I'm just concentrating on maintaining a basic level of hygiene.

Normal service will be resumed as soon as possible.

Waste Not Want Not . . .

Waste not Want not but it's time for a new beginning. In a new house. Where all the plumbing works properly.

This week I've had the plumber out 3 times. The recently fitted replacement waste disposal system clogged up. It refused to evacuate the workings of its innards into the drain. Instead it had tried perversely to rid itself of its contents by violently vomiting. Me, the kitchen sink, windows and cupboard doors were all covered in a dirty regurgitated mix of shredded vegetables, teabags and slimy water.

I took a risk and plunged a hand into the unit up to my elbow. Fret not: I only did this after I'd turned of the electricity. The blade and impeller were both moving freely. I believed it was a fault with the new unit. My previous waste disposer had worked well for 10 years with only a couple of minor hitches. One of these being when I'd inadvertently thrown a scouring pad into the works. I'd only replaced it as I'd had a new double sink fitted. Believing that at 10 years of age it should retire before it died.

I sent out an appeal to my friendly plumber. He called in on his way home. Dismantled the drain and found it was thoroughly clogged. He checked the waste disposer unit said it was working perfectly well. That the clogged drainpipe was the cause of its malaise. After an hour he left with everything working well and flowing freely again.

The next evening while preparing a salad I turned on the waste unit. Within seconds an ominous salad red and green tide started to head once again in my direction. This time I was faster on the draw. Killing the power before it had another bout of projectile vomiting. The plumber was there within half an hour. Still said he'd every confidence in the unit. He made a minor adjustment to the angle of the drain, removed a 'baffle' in a pipe (whatever that might be) and once again left me. He suggested I run the water well after using the unit. To ensure any residue was cleared from the drainpipe. Which I duly did.

This morning I found the cupboard full of water. Another phone call. He arrived within the hour. He thought that as the pipe work had been taken apart so often over the last few days that it could be a washer problem. He checked all the joints, washers, replaced everything. Tightened every nut, screw, bolt whatever. Swilled and flushed through the system. Neither of us really feeling 100% confident. He was about to leave. Re-assuring me that any more problems and he'd rethink the pipe work from scratch.

It was at this stage the overflow pipe from the tank in the loft started to gush.

The central heating engineer is booked to come and fit a new cold water tank tomorrow. Neither he nor my plumber believe the ancient tank will accept a new ball valve fitment.

It never rains but it pours.

Throwing in the Towel

My Man has thrown in the towel. He consulted a solicitor with a view to taking action against the law firm that dealt with his compensation claim. Four years ago the settlement was 'bungled'. He wasn't well. He was slow witted and daft. We asked if it could be postponed until he felt better but we were persuaded to settle out of court as soon as possible.

For a 'no fault claim' and with legal protection insurance he ended up paying his legal costs!! There was no money for loss of earnings, future loss of earnings or lost pension provision.

I've known a friend end up with a larger payout for a broken ankle at work - and this when it was discovered she had previously undiagnosed osteoporosis. Since when she has used her compensation money to go on trekking holidays on 4 continents. I can see why he feels aggrieved.

Once his mind started to focus again (after the diagnosis and treatment for under active thyroid) he started to explore whether he had case. A local solicitor searched through files. He agreed there were many instances where there was a lack of 'duty of care' and 'professional negligence'. But to go through the legal procedure will cost. It is also costing him emotionally.

I agree with him. It is wrong. It is unfair. But I don't think it is healthy to keep looking back. The length of time it has taken to reach this stage: where we needed to make the decision whether to go for a barrister opinion has taken almost 2 years. At the age of 65 I don't think he has time to waste on 'justice'. We could do with the money. But . . .

Over the years he has fought many instances of injustice for other people. Against insurance companies, banks, pension firms and once a case of unfair dismissal. And invariably won their case for them. That is why I initially supported his decision to look at taking action. But it has been so time consuming. It is likely to be costly . . . He has so little energy I asked that he drop the idea so that we can use his precious energy on some form of enjoyment.

He has, reluctantly, agreed. He wrote to the solicitor and pulled the plug on the project. Hence his increased anger and irritation. Against everyone. But at the moment, I'm in the frontline.

Stubborn As a Mule

He's as stubborn as a mule MyMan. He will not listen: he will not accept advice: everyone (including me) is an "interfering" idiot who has no idea of his suffering.


Today he had to go into town to pick up files and papers from his solicitor. The load was likely to be heavy. I hauled a trolley case out of a cupboard for his use. I tried to park right outside the office but no spaces. He refused to wheel the case to the solicitors. And I could see him bent to one side as he carried it to the office. He was annoyed when the secretary there tried to help him. Then he became even more irate as he found it difficult to get the load into the boot.

I can see reasons why he's such a cross patch but when he moans about not having any energy left I can barely suppress the urge to tell him why that may be.

I reckon I know why women live longer than men. It's God's reward to us for taking care of our men

Swine Flu symptoms

I have at last managed to buy a digital thermometer. So now I will be able able to tell the difference between having a raging fever and/or a hot flush. My very old mercury thermometer broke a couple of years ago. It doesn't feel the same taking a temperature without having to shake down the mercury before and after. Sigh - for the good old days.

Some practical suggestions for keeping healthy, and hints on how to avoid succumbing to a virus such as Swine Flu can be found here.

Tempting Wife

I was taken to task the other day for buying 'tempting treats'. Like most things in life the more time MyMan and I spend together the more I am amazed that we have been married for 38 years.

When we first married I would buy a bar of chocolate. Have a couple small squares and not think about chocolate for weeks. Then when I again craved some chocoalate I'd return to the sweet dish and . . NOTHING - gone - vanished. After a while I realised that if I wanted chocolate I had to eat it before it was eaten. Weight started to creep on.

Now I am trying to lose weight. My view is that if it crept on then the best way to lose it is for it to creep away again. I still allow for occasional treats. Some weeks it's one treat per week. Desperate times it could be one treat per day. I buy packs of small chocolate treats. MyMan also needs to lose weight. He thinks I shouldn't have small treats. He blames me for his excess weight. If "we didn't have treats in the house" he would be able to resist them.

He claims to have more willpower than I. He has never been tempted to buy sweets. No he wouldn't. He's never tempted to shop either.The rare occasion I asked him to go buy a loaf of bread he also returned with 4 doughnuts and 2 almond macaroons. One doughnut was for me.

I've tried not having any treats in the house. But he expects something 'nice' to eat in the evening. Nice+ chocolatey and sweet and BIG. If none are available his grumpiness levels escalate to the point where I feel tempted to knife him. So I buy him ice cream to eat with fruit as a pudding after his main meal. At his suggestion I bought treats for myself and 'hid' them. I also buy some tasty items to feed my bridge friends when they come to play which are also hidden away.

During a recent night time prowl he found my hiding place. He opened and devoured my milk chocolate snack packs. As there are "only 2 small biscuits" per pack he ate 4 packs. He also went on and ate half a packet of 'expensively posh biscuits'. He didn't tell me. I only found out when I went to retrieve them for a bridge party several days later. My bridge friends had to make do with plain Rich Tea. Yesterday evening he ate my weeks supply of 6 x Toffee Crisps at 'only' 99 cals. He told me off for buying them in small versions: "only 2 bites and they're gone" -"Such an expensive way to shop".

When I try and tell him that these sweet treats are what add to his weight misery he tells me he gets hungry in the night. As he is constantly fighting Co-Codamol induced constipation, I suggest that a dish of high fibre cereal would be much better at warding off hunger. Then he tells me off again. That if the treats weren't in the house he would have to make do with cereal. I'm looking for a new hiding place. I'll try the cleaning cupboard. I don't think he ever looks in there.

I Require an Energy Boost

I need an energy boost. Besides ferrying MyMan to and from his hospital appts I'm thinking and using my memory bank for the 2 of us. Trying to keep an eye on his drug management (he's taken back control of his medibox again but needs a discrete eye kept on it); motivating him to attend appointments, motivating him to do a few basic tasks, reminding him once more what the Drs have said, reminding him to rest, or to take exercise, to do this or do that, then I have to see to household cleanliness, laundry, shopping, cooking.

Even though I draw up a weekly planner occasionally balls get dropped. He then gets impatient with me as 'we've not done' such and such . . . He can't understand why I feel so very tired sometimes. That to me, maybe 'such and such' wasn't high on my list of priorities.

Why is his memory so inconveniently good - sometimes?

Shocking Acupuncture

This weeks trip to the NHS Acupuncture clinic led to MyMan have needles inserted into his neck muscles and then connected to an electricity supply. The Dr warned him that he is likely to feel 'off' for a few days. He still thinks it is 'mumbo jumbo'. Everything he reads on the subject highlights the fact that 50% patients treated do not feel any benefit. I raise the other side of the coin that therefore 50% must feel some beneficial effects. He isn't impressed by my reasoning.

I can't figure out why all the things he used to love about me: my sense of humour, my independence, my practicality, my capabilities, my logical brain, my dreamy nature, my rose tinted specs, my spontaneous flexibility, my optimism - are all an increasing irritant to him.

I feel as if I could plug him into the mains supply myself very soon. I warn him that if he doesn't calm down he may spontaneously combust.

Spontaneity

I was very low yesterday. I wanted to live near my sister. I was desperate for a pop in visit to chat, share worries, have a good healthy giggle over a cup of tea.

This morning I still felt low and thought how much I missed the chance of spontaneity in my life. I couldn't remember the last time we did anything spontaneous. With nothing planned for the day I had breakfast and went in for a shower. Standing there in a lather and the door opened. "John rang to ask if we could meet them for coffee this morning? I said yes - we're to meet up at the garden centre at 10.30". That surprised me.

I was surprised even more when after a cup of coffee on the garden centre veranda it started to rain. We all moved inside to try and find a table for 6. MyMan asked everyone "Why don't you come back to ours?" - well - and there I had been quietly wishing for spontaneity. I have had a double dose. I just wished I'd made the beds, cleaned the toilets and put fresh towels out before we went out. And with a lounge that had not been cleaned since a week before I pulled my back. Ah well . . .

If we're back in spontaneous mode I'll have to pull my finger out and raise my game housework wise.

Side Effects

I thought that perhaps the acupuncturist had found his irritability button and turned it to high but on reading 'possible side effects' of his new lyrical drug I see that irritability is one. Along with confusion. Just what I need. Thanks a lot Doc . .

Quasimodo

I've been crawling around the last few days with a stance and gait a bit like Quasimodo. I've been hauling the lounge furniture around chasing the dust and cobwebs away. Once too often obviously.

I got out of bed stiffly last Thursday and pulled my back muscles as I tried to catch a urine speciment in an itsy bitsy pot for the nurse. The joys of being a woman.

My pelvis tilted - ouch and F**k . It took me 3 days to get to the point where I could place both feet flat on the floor while I stood. As one leg was temporarily several inches (it felt like feet) shorter than the other. For 2 days I could only sit in a firm garden chair or in my Lloyd loom chair in the bedroom. I had to lie down to relieve and relax muscles but then had to endure a marathon exercise to sit up again.

We both lived on fruit, bread, cheese and painkillers. I became tired cranky depressed. It was a timely reminder for me that this is what MyMan has to endure daily. I was weeping with frustration and tiredness after only 48 hours. Once my powers of concentration returned I enjoyed the excuse to sit, rest. To spend time by reading, reading, reading and watching the cricket.

What a pain in the neck

What a pain in the neck it is having to attend hospital appointments. Up early to leave to get to Exeter. Rushing along with the rush hour traffic we make it to Heavitree hospital by 8.50. MyMan is exhausted. Exhausted by depression. Exhausted with the effort of rising early enough to leave the house by 8 a.m. Exhausted by the nervous energy wasted on the journey.

Exhausted as he sat checking on all the other drivers. Exhorting me to 'watch out'; 'that one's changing lanes'; 'mind that car'; 'God, for a minute there I thought he wasn't going to stop'. I breathe a sigh of relief that all these possible threats of danger seem to be driven by males. MyMan calls on 'God' and 'Jesus' a great many times as a passenger. For a man who has no religious beliefs it's rather touching in a way.

I was hoping that a new larger safer car would reassure him. But it appears not. I'm not sure if the anxiety of being in a car adds to the pain he feels or whether the pain he feels adds to his fears. Pain being a perpetual reminder of his accident.

It's several years since he last had a pain management assessment. This time I sat in with him. He needs me to at least listen to what he is told. Besides my acting as his memory he needs motivation. Motivating to follow through with the suggested programme. The action plan is:

1. A new pain relieving drug that will also help him sleep


2. A 6 week course of acupuncture


3. Physiotherapy to correct posture and tone muscles

He dreads the idea of the regular twice weekly journeys to Wonford and Heavitree hospitals. He was looking for an excuse to refuse the suggested treatments. He doesn't want to 'place more pressure' on me by taking him there each time. He doesn't want to ask a friend to taxi him there. nor to use the hospital car service. He's unable to use public transport.

There was also talk of a possible minor surgical procedure. But I'm just thinking of it by taking it one step at a time.

A National Debate

I hear that there is to be a National Debate on the future of 'Care and Support'. The DHSocial Care want us to " encourage other people to talk about care & support".

Talk is easy enough. It's actions that speak louder than words. And of course any actions planned will need financing. But maybe this is a step in the right direction.

As far as I'm concerned 'Care in the Community' was all very well with its high ideals. But it wasn't sufficiently funded from the beginning. Community Care really means 'leave care to the family' or 'leave the responsibility for care to the neighbours' .

There is even a 'blog' on the need for change 'Care Support Independence' - why don't you pop over, have a look and maybe join in the debate.

Symptoms of Swine Flu

Symptoms of Swine Flu? I wonder what they are. Obviously a sore throat and fever.

I went into the surgery this morning to book an appointment with the nurse for a routine blood test in a couple of weeks. The first thing I was asked was did I have a sore throat - "yes, I often have one during summer". It's caused by a post nasal drip due to hay fever.

Did I have a fever? "How would I know with all these hot flushes I keep getting? "

I managed to make an appointment. If I should end up catching swine flu I now know there is no point in calling in to the surgery to see a doctor. The waiting room and all the local chemists have huge notices telling us to stay at home if we have swine flu. Don't go to the surgery.

I thought all us 60+ year olds were supposed to be immune from it. Perhaps I don't 'look' 60.

It's Been a Very Busy Month

It's been a very busy month. Appointments [mine] Carer Support worker and health MOT; [MyMan's] Consultant psychologist, ENT Consultant, CT scan and the West of England Eye Unit. Trying to source a new Toyota Verso. A friend flying in to stay at a local hotel; to be entertained between breakfast and bed time.

In between times I've been trying to enjoy myself - bridge class, playing bridge, and coffee with friends. Along with all the usual chores of laundry, cleaning, cooking and shopping. The garden's had to look after itself. And it shows. Shame. Can't be helped. Something had to go. It was either MyMan or the garden. My choice may be different another month.

MyMan has had a few sessions with the psychologist. Testing his short term memory problem. The psychologist is "almost 70% certain there is no dementia". He believes that MyMan lacks focus and concentration due to depression and the energy sapping chronic pain. He has referred him to the Pain Management Clinic for a full re-assessment. But he wants me to monitor the situation and return to him if MyMan appears to be getting worse. He said that if dementia is present, there is much that can be done if it's 'caught early' enough.

MyMan also has a cyst on his eyelid which is causing him a problem and will need minor surgery. He's had a CT scan for his chronic sinusitis with a view to possible surgery. And now he has infective conjunctivitis. It's just as well most of my health results not showing up much of a problem; other than a raised BP. I don't have time or energy to be unwell. I'll have to practise the yogic breathing exercises more often and chill out.

Margaret, my carer support worker, suggested that MyMan could use the hospital car service. It would give me a break and the chance to have a couple of hours alone at home. I loved the idea but MyMan said he didn't want to travel over to Exeter with a 'stranger' in a 'strange car' .

I'm TATTI

I think my body may be telling me I've had all I can take. I've had such a long list of symptoms. IBS, tension headaches, muscles pains and weakness, breathlessness and palpitations. And I'm TATTI. That is I'm Tired All The Time.

I finally went to the doctor. After an alarming 2 hour session of a a racing heart and feeling twitchy I thought I'd better go along for a check up. By the time the appointment came around I felt much better. But rather than cancel I thought I'd go in and just tell him how I had been feeling. I know that I've been stressed and tense. I assumed all of my symptoms to be psychosomatic.

Sitting in the waiting room I could feel myself getting tense and anxious. No amount of deep relaxing breathing could ease the feeling of unease.

By the time he checked my blood pressure it was UP. He ordered a routine ECG, fasting blood tests and another BP check with the nurse. I'm to return to see him a couple of weeks.

A couple of days after the blood test I received a letter telling me to book in for a 'routine blood test' in a months time. What have they found?? My anxiety levels are on the up again! Take a deep breathe; breath and chill out. CALM .... CALM ....

At Last a Decison . . .

Well at long last a decision has been made. I now know which car we are going to buy. Well, not exactly which car as we now have to negotiate the next decision. A 'new' new car, or a demonstrator 'new', or a 2nd hand.

My much loved Jazz which was perfect for whizzing around the local lanes and small villages and towns has not been suitable as our main car. MyMan finds it difficult to get in and out of it. It is a hard jiggly ride for someone with back problems. On the rare occasions that MyMan drives, I too find it hard in the passenger seat and often end up with back ache.

It's taken many many months to choose. Initially we liked the Toyota Corolla Verso but it didn't have an automatic model - only semi-automatic. I wasn't keen. Even if it did sound very macho.

So we progressed to looking at the Ford S Max; the Citroen Grand c4. Honda CRV and numerous others. Many very comfortable cars. The big difficulty was in finding a petrol automatic. For the limited mileage we do each year I didn't want the hassle of a diesel automatic and the concern about 'particulate filters' maintenance when driving so many short journeys. My annual mileage usually less than 5000 miles. I cannot get particularly excited about particulate filters - whatever ... Some salesmen tried to tell me it wouldn't be a problem. But I didn't want to have to pay extra on servicing each year if I'd only done limited mileage. A potential problem I don't need or want.


The Honda CRV very comfortable when MyMan, with his short legs, managed to climb in. But he felt it would be embarrassing to take a step stool every where with us, so that was off the list. We almost purchased a Nissan Qashqai. I love the adverts. I like the idea of young funky urban image. No problems finding a CVT automatic petrol engine. Only problem was it was a bit small. MyMan had to flex his neck (difficult) to get in. I loved driving it. It felt just like the Jazz. But larger and more solid. MyMan felt it was a good compromise but still hankered after the Verso. He'd taken lately to admiring them in car parks and sighing deeply.

Then just as we were going to commit to buying the Qashqai we read this article in the Telegraph. Two weeks later; 2 test drives completed and we are about to seal a deal and buy a new car. New to us that is. I'm not sure there will be any 2nd hand ones on the market yet so we'll see if we can find a demonstrator. It's easy to drive but feels a bit wide to me. Especially round the narrow Devon lanes. I hope to get used to it once I drive one regularly. It's a sedate drive but maybe at age 60 I should now become a sedate (or a sedated) driver. At least I'll be able to eyeball lorry drivers. Toyota have a reputation for reliability. I hope it will be money well spent. It seems a lot to pay out when we no longer have an income.

Carers' Support Each Other

On Wednesday evening I went out. I left home at 7 p.m and like a teenager going out on the razzle for the evening I felt an eager sense of anticipation. In a small hotel betwixt and between Honiton and Exeter I met up with 11 other carers to enjoy a drink and share stories. It felt a bit like an Al-anon meeting. I almost stood up to say "My name's Penelope and I care for a disabled and mentally depressed husband". We ranged through all ages from 30s to mid 60s. But all of us were women. Caring for a partner, husband, son or daughter. Many had far more traumatic situations to cope with than I. Suicide attempts. But they all felt that I had been coping for a long time as many of them had been carers for'only' 2 years.

It was good to share our experiences and to hear that so many of our PIGS [Person I Give love and Support to] carry on in the same way. How self centred and selfish they are. How they say one thing but frequently mean another. How much they dislike our going out to enjoy ourselves. The emotional pressure or emotional blackmail our PIGS use. Our own feelings of grief and loss. How sadness affects us. That Depression is contagious.

For 3 hours we talked. Sometimes seriously. But more often in a lighthearted way. We also were able to laugh. Many laughs.Laugh a lot. Shared laughter is the best thing in life.

Carers' Support Worker

Well - if nothing else meeting with a Carers' Support Worker from MIND on Monday gave me the chance to talk, talk and talk. I assumed I'd have an hour. But the first thing Margaret said was that I had 2 hours to talk about anything, everything or nothing. She explained that there isn't much they can do in a practical or financial way. I hadn't expected a magic wand. Just to have the opportunity to talk to someone who wouldn't be judgemental or feel I was doing MyMan down was a form of relief.

While I was talking things over I was still inclined to be defending or explaining MyMan and his mental problems. It was a form of relief. She didn't think it was unreasonable of me to wish to move closer to family. Agreed with my view that if MyMan rarely ventured out far there was very little to matter to him about where we lived. But even then I still felt inclined to balance the scales. I can see from his point of view that what he knows could be much 'safer' than a leap into the unfamiliar. A case of 'It's better the devil you know when choosing whether to leap between a rock and a hard place . . . . '.

I've agreed to meet up with a small group of carers who are in similar situation. To see if we can provide mutual support. I was told I had a good sense of humour and was likely to enjoy the company of one lady in particular. Her Man developed depression following his retirement and their move to Devon. This was just the scenario I had planned to avoid. Choosing to relocate to our chosen retirement area well in advance of the event. To establish roots before the next major change in our life. But as they say 'the best laid plans of mice, men and women gang awry . . .'

I found I was emotionally exhausted in the afternoon but still entertained a friend to afternoon tea. It was her birthday.

I'm trying to be more selfish. To stop considering 'friends' needs above my own. But like an addict it's one step or one day at a time. I'm trying in more ways than one.

Games we play . .

MyMan encourages me to get out and enjoy myself "as much as possible". Then when I do he says how dead the place seems without me. I try to save a day a week when we can go out together. And I'm always home Saturdays and Sundays holding myself in readiness for a jaunt out somewhere together.

We agreed we would go out on Sunday this weekend. Once again I waited for MyMan to surface from his slumbers. We had a similar conversation as we do prior to every trip out together. "Where shall we go?" he asks me. "I must get a walk in, somehow. . ." he said. I draw breathe to reply and he suddenly suggests "Burrow Farm Garden - I love it there . . . ". Surprised as he rarely suggests anything that he'd like to do I draw breathe again to agree. Before I can open my mouth he tells me "that's no good - it will make your hay fever worse".

I disagree. My hay fever is bad enough here where we are surrounded by at least 8 fields of rape. Especially after spending a few hours toiling in the garden. Although the symptoms of hay fever can feel like a dose of flu there is no way I will allow it to limit what I want to do. I tell him so. Irritable now he tells me he doesn't want me to go somewhere where I'll feel the worse for going. He'll forgo the visit to save me discomfort. But wistfully tells me " I do so love it there". .

I decide I'll go anyway at which point he says he feels it will be too far for him today. He doesn't want to do a long journey. 'Long' means about 12 miles and will take about 20 minutes.

I think I'm beginning to learn the rules of this 'new game'. But he doesn't like how I play.

It's in the Stars . .

It's in the stars or is it 'just' a co-incidence? Waiting for an appointment yesterday I read my stars for the day. Jonathan Cainer said that I put up with a lot, I take on more than I need to, I help out more than I am obliged to and that "you give but don't always get much back" . . . . He says I don't mind (?!) "You hardly stop to think whether there should be rewards for carrying so many burdens on your back, even when really they represent weights that other should be shouldering. Don't ask why life is suddenly starting to be kinder to you. It's what you deserve".

Well I hadn't noticed life suddenly being kinder to me. I have started to try and focus on the positive aspects of my world. I am trying to appreciate more the good things in life. Shoving all the worries to the back of my mind. Ignoring the negativity emanating from MyMan. Trying to let the aggression and irritability bounce off me without any adverse effects. I imagine myself in a protective bubble. When MyMan is pleasant and 'normal' I come out of my bubble but it's always there in the background . . .

I had a phone call as I was preparing lunch. Up to my wrists in oily pilchards MyMan asked me "who's that?". I told him we wont know till its answered. He took the hint. He doesn't always. It was for me. Margaret from the Mental Health team wants to meet me to find out how I'm coping. She offered me the chance to visit her where we could talk without my feeling " inhibited or disloyal". I almost wept at the words and her understanding. I rarely get the chance to speak privately about my anxiety over MyMan. Other than this blog that is. It is still hard not to feel disloyal but he is not the man I've spent so many years of my life with . . .

In a strange way I am a mixture of hopeful, expectant and nervous about the meeting. Maybe 'this is what I deserve'?