Sunday, August 22nd 2010

End of the week catch up

Okay, it’s time for a bit of a catch up on the day-to-day stuff which has been rather neglected of late as I poured all my energy since leaving the hospice into migrating the blog to its new home. That project is almost complete now and the next step will be to raise the profile of the blog so that it shows up in search engines. My old blog site did very well in Google search and I’m hoping that the new one will fair just as well now that I have registered it. In the meantime it has been encouraging to see that traffic during the first full week has been quite good. It’s certainly nice to see familiar names find their way to the new site! And thank you for all the lovely comments I’ve received lately. They are always very much appreciated.

Aches and pains

I’m starting to get a lot more pain in my arms and shoulders now. In fact it’s even starting to become a problem in my legs and neck. I suspect it’s a combination of disease progression, i.e. muscle wastage, and lack of mobility. After lying in one position all night my muscles simply stiffen up to the point where it is quite painful to be handled. I get the same problem now sitting in a wheelchair all day. In fact when I think of it there is a clean split straight down the middle regarding how I spend my time i.e. 12 hours in bed (not all asleep) and 12 hours in the wheelchair. Perhaps it’s small wonder then that I’m getting so many muscular problems now. I do of course still have some passive physiotherapy exercises performed on me each day but at times it does feel like we’re fighting a losing battle. In fact because my arms have become so immobile now we are repositioning and giving them gentle exercises every couple of hours. It’s a case of three wiggles, two waggles and no woggles! In fact one of the first things you learn in physiotherapy school is to never woggle a client. Can you imagine the headlines if it ever got out: ‘Man found woggled’! smile_regular

A consequence of sitting in a forward facing wheelchair all day is that you tend to look straight ahead for long periods of time. This has the effect of 1) only seeing people as they appear in your field of view, and 2) getting a stiff neck. I’ve started noticing lately that it is becoming a bit painful at times to turn my head through 90° in either direction. Now I have to try and remember to make a concerted effort to move my head from side to side at frequent intervals to alleviate the problem.

The above problems once again show how a lack of regular movement in any particular muscle group soon leads to problems. Just think for a moment how much an able-bodied person will consciously and subconsciously move the various parts of their body during the course of a day. When I think back to all the cycling and walking, the gardening, the DIY and other physical exercises I used to do. Sigh…

One thing I have started to do recently when I’m hoisted up from the bed each morning is to use my legs to swing backwards and forwards as I push against the mattress. My carers thought I was doing it for the fun of it but I’m actually doing it for the exercise and as a last defiant gesture against an unrelenting disease. So for a few minutes each morning I can create this illusion of moving myself as I sway backwards and forwards. And yes it’s fun too! smile_regular

Care package

We’re in high summer and as usual for this time of year my care package is creaking and groaning a bit as various people in the team take their annual holidays. This time round I have the added problem of requiring double ups several times a day and this places a further burden on the care agency to allocate staff. The one person they did allocate to be a regular helper on the double ups has been off more than on lately and at the moment I seem to have an endless stream of strangers coming through the door every couple of evenings. This is far from ideal particularly as it is always at the times when my care is most personal. And to be honest I’m getting really tired of lying half naked and paralysed on my bed whilst yet another perfect stranger stares down at me!

On a far more positive note it was only through this constant stream of new faces was I introduced to a very charming young Nepalese woman who created a big impact with me from the word go with her quick learning, proactive approach to work. Here was someone who was using her initiative rather than standing around waiting to be told every little thing. In many ways she reminded me of the way Francesca used to work, particularly as both of them came to me with very little experience of working in the care industry. I guess with some people it just comes naturally. And like Francesca she has a very friendly and likeable personality that I found myself instantly warming to. As the marketing folks would like to say, she ticks all the right boxes! I’m now keeping my fingers crossed that she can join my care team on a regular basis fingerscrossed.

And lastly, at least on the subject of care, I would like to say a really big thank you to Debbie who has done so much to keep the care package running as smoothly as possible these past couple of weeks. She has amazingly worked 11 consecutive nights, in addition to all the weekday and weekend hours she has done for me, whilst covering for other staff who are on holiday. What a trooper!

A bit of an emergency!

I had a real fright last Friday morning when Ann greeted me by telling me that water was dripping through the kitchen ceiling adjacent to the strip light and pooling on the floor! I’m normally fairly sleepy first thing in the morning but with news like this I immediately pricked up my ears as the one real fear I have is being trapped and paralysed in a burning building. And as we all know water and electricity do not mix!

A quick peek in the airing cupboard directly above the kitchen revealed a wet carpet. This was traced back to a weeping valve controlled by one of the electric zone actuators. Whatever happened must have occurred during the night whilst I was sleeping. I shudder to think what could have happened if the water had found its way into the zone actuator or the strip light.

We tried contacting my local plumber but couldn’t get a response. In the end the solution was much closer to hand. The builders working just outside in the garden were able to contact a plumber they use and who subsequently turned up at the door within the hour, identified what needed to be done, went away to get some parts, drained the system down, replaced the parts, refilled the system and had everything working again by lunchtime. Although it was only one of the valves which had failed I decided to have them both replaced as they were both the same age. I figured it was only a matter of time before the other one went anyway.

* * *

And finally just before I sign off I would like to say thank you to my friends Bill and Kim from Eli Lilly who have both sent me some very nice e-mail letters lately. They were very much appreciated.


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Tuesday, March 23rd 2010

The drugs don’t work!

Over the past week we’ve been experimenting with Diclofenac in combination with Paracetamol and the pressure relieving mattress to try and find something that would give me a good night’s rest. Unfortunately they have all failed and I continually wake up in the early hours of the morning, typically around 3:30 AM by which time I’ve been lying in the same position for about 5 1/2 hours. No sooner am I awake and I become aware of discomfort in my lower back which is sufficiently uncomfortable to continuously impinge on my consciousness thus preventing me from getting back to sleep. So until 8 AM in the morning I am fully conscious but with my eyes closed. Now these drugs that I’m taking are supposed to be slow release and in theory should carry me through the night but to be honest they are either totally ineffective or past their best by the time I wake up. Consequently after weeks of partial sleep I am really starting to feel fatigued and I definitely don’t feel my best during the day.

It’s also been a frustrating week in terms of trying to obtain a profiling bed, and it hasn’t been for want of trying either. I’ve had district nurses, GPs and the care agency all breathing down the necks of the folks over at Joint Equipment Services. Finally at lunchtime today one was delivered and two very pleasant chaps soon had it assembled. I can now also start using the new foam mattress that had been delivered last week. Because it is actually thinner than the pressure relieving mattress it would actually be too low to the ground for me to be able to stand up even with the assistance of a carer. But the new all-singing all-dancing profiling bed can be raised or lowered so it should be a lot easier for me.

I’m really looking forward to tonight and seeing what this bed is capable of. Hopefully we can configure it in such a way that it will take the loading of my spine although it may turn out of course that being left in any position for too many hours will start to cause problems. But for the next two nights we can monitor the situation quite closely as I am taking advantage of the Hospice at Home service. Starting tonight I shall be having a Macmillan trained waking nurse stay with me from 10 PM through to 7 AM. So if I should wake up in the night and find myself in pain I will have somebody close at hand to either reposition me or administer some pain relief medication.

Fingers crossed for a long and peaceful sleep!


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Tuesday, March 16th 2010

Another sleepless night

So much for the pressure relieving mattress! I woke up at some time before 4 AM with discomfort in my lower back. It steadily worsened until every movement of my legs and even my regular breathing was aggravating it dashing all hopes of ever getting back to sleep. And it really was the longest night where the minutes seemed like hours and daylight would never arrive. To try and alleviate the pain in my lower back I repeatedly tried raising it up from the mattress a few inches by folding my legs and pushing down. But this repeated action eventually caused the duvet to slip off the side of the bed shortly before 6 AM so for the remaining two hours before Ann arrived I was not only in pain but also cold. I don’t think I’ve ever been so glad to see someone and although it was very painful getting me to sit upright I did compensate by having a luxurious soak in a foam bath. For the rest of the morning I was too shattered to do anything and just sat in my office chair trying to doze off.

I’ve chased up the district nurse to find out what was happening with regards the profiling bed as clearly the pressure relieving mattress was not effective in curing my back problems. Unfortunately I was told that there are none available so my name has been placed on the waiting list but at this stage I have no idea how long that will be.

In response to a priority call from my care agency, Lara, my palliative care doctor from the hospice phoned to discuss the problems I was having sleeping and the pain that was preventing it. She’s prescribed something called Diclofenac which is an anti-inflammatory drug that can be used to reduce pain. She’s only prescribed a one-week supply of these tablets as prolonged use can have a negative impact on the stomach lining so people who take these tablets long-term also need to take something else to counteract the side-effects of Diclofenac. Lara has also made me aware of the Hospice at Home scheme which is part of our local St Michael’s Hospice that could be called upon if the tablets don’t work. Basically what it means is that I would be given a waking nurse for a few nights who would be in the house with me ready to assist if I woke up in pain.

As the evening wore on I became very apprehensive about going to bed for fear of another night like the last one. Until recently I’ve only had to deal with MND and its effects during my waking hours and took consolation in the fact that at the end of the day I could sleep all my troubles away. But now this horrible disease is chasing me into my sleep and depriving me of the sanctuary of oblivion.


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Monday, March 15th 2010

Still in pain!

Lower back pain continued to plague me all weekend. Every morning I’m waking up in the early hours with discomfort in my lower spine and surrounding area that steadily builds in intensity preventing me from getting back to sleep. Trying to move my legs or indeed even the simple act of breathing aggravates it. By the time my carers arrive at 8 AM I’m about ready to start climbing the walls. Even lifting me into an upright sitting position is terribly painful.

Not sure if coming off the Tramadol tablets so abruptly was the cause but I was terribly ill over the weekend with pale skin, little appetite and at one point physically sick. Not my best weekend and it left me feeling completely drained and of course extremely tired no thanks to all the sleep I’ve lost lately.

On Monday morning I had an emergency visit by Heather, the district nurse, as by this time it was becoming obvious that the pain in my back was not going to go away by itself and only seemed to be getting worse. My care agency were becoming concerned about my lack of sleep and general health and put a call in first thing this morning. Fortunately the district nurses were aware of the problem as they’d also received a fax from my GP asking them to look into pressure relieving mattresses and possibly even a hospital bed.

As a first step I decided to settle on just having a pressure relieving mattress and this was ordered up in the morning and amazingly was delivered just after 4 PM in the afternoon. To be honest we’re lucky here in Basingstoke because Adult Services’ Integrated Community Equipment Store for the whole of Hampshire is based within the town so obtaining equipment, provided that it is in stock, has never been a problem. The district nurse returned shortly afterwards and set it up ensuring that it was correctly inflated for my bodyweight. Apart from the mattress itself the only other piece of equipment is the pump and controlling electronics and this runs almost silently. Once inflated the mattress is about 8 inches thick so cannot be placed on top of my existing 9 inch thick pocket spring mattress. This has meant trying to find a home for a mattress where space is at a premium as the house is starting to fill up with the clutter of all this equipment I now need. For now it’s keeping me company in the study standing vertically up against the wall but will not be able to stay there as it will restrict the movement of my mobile hoist when it comes time to use it. We solve one problem and create another!

With the mattress removed there is only the base unit of my bed left and it was at this point that common sense finally kicked in and I asked the district nurse to order me a profiling bed just in case the pressure relief mattress is not effective on its own. Like everything else associated with this disease I’d resisted the offer of having a hospital bed, or community bed as they are sometimes called, for some months now. I was quite prepared to accept having one in the extension when it gets built but didn’t like the idea of giving up my lovely bed and rearranging the upstairs bedrooms. I guess subconsciously it was another futile attempt at trying to maintain the life I used to lead, and accepting a hospital bed was like giving in. I know that might sound crazy because ultimately MND will march along at its own merry rate regardless of what I want or how stubborn I am. But sometimes I just like to preserve the illusion of normality for just a little bit longer. Anyway let’s hope that tonight I can enjoy a decent night’s rest, fingers crossed.


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Friday, March 12th 2010

Painful mornings

I’ve been having a terrible time this past week with pain in my lower spine and the consequences of taking medication to alleviate it. In my previous post I mentioned I was about to try something called Tramadol, a slow release painkiller that would hopefully bring some relief in the early hours of the morning and until my carer arrived. Unfortunately it does not appear to have brought any benefit as I still wake up around 5 AM with pain in and around my lower spine and can do nothing but lie there patiently for the next three hours until I’m ‘rescued’. We tried varying the dosage starting initially with one tablet and progressing up to three tablets just before going to bed but there doesn’t appear to be any discernible difference no matter what quantity I take. So I may not be reaping any of the benefits from these tablets but I am most certainly suffering from a couple of their side effects. I’ve been waking up every day with a very dry mouth and it seems to persist through most of the day despite drinking lots of fluids. But far more uncomfortable has been the terrible constipation that has plagued me all week. These tablets just seem to slow everything down to the point where it is difficult to pass anything, a most uncomfortable feeling. So today I made the decision to stop using Tramadol as it only seemed to be bringing new problems and not curing old ones. I had a telephone consultation with my GP today to see if there was any other painkiller but she was reluctant to prescribe any opiates as they would only make the constipation worse. Instead she is going to chase up the district nurses and I guess the OT people to see what can be done about getting a pressure relieving mattress for my bed.

Sad day

I suppose the writing has been on the wall for some time but I just didn’t want to believe it. (Selfishly) I kept hoping that things would change and everything would be back the way it used to be. But unfortunately it was not to be. Francesca has pulled out of my care package because of the escalating workload she has with her main job. For some time now Francesca has been performing a bit of juggling act trying to keep everyone happy, but the scope and responsibilities of her main weekday job have in recent months began to encroach on the weekends which of course is when I depend on her part-time care skills. This weekend was to be Francesca’s time with me but the demands of her full-time job currently have her working in Europe. Clearly with a care package like mine that is becoming ever more complex it is absolutely imperative that we have a team of carers that are reliable, flexible and willing to cover for each other. Francesca feels that with her current level of work she would not be able to commit to my care on a regular basis. Of course I was very upset to hear the news as Francesca was my longest serving carer and (perhaps naïvely) it had been my hope that she would be looking after me for the remainder of my journey. It’s also particularly frustrating that it should happen now when my needs are increasing by the month. Not only that of course but we had become good friends and I always look forward to the weekends and my time with her. But of course everyone has their lives to lead and Francesca certainly seems to be doing well in her full-time job so in that I wish her continued success. I would also like to thank Francesca for everything that she has done for me in the time that we have known each other. Although it was not her choice as a main career there was no doubt that she was a naturally gifted carer. I will miss having her around. However we shall continue to be friends and keep in contact so I daresay that she will continue to pop up on the blog from time to time.

Ann now becomes my longest serving carer and the last member of my original team.


Here’s a bit of blog trivia. Today’s post is the 100th unique post. That’s 100 separate updates to my blog in just over two years. I would have reached this figure a long time ago if last year’s daily events were posted individually (like they are now) instead of being grouped together several times a month. Anyway here’s to the next 100!


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Thursday, March 4th 2010

The longest night

It’s no exaggeration when I say that I’ve just had the worst night of my life! I got no sleep at all and lay awake all night unable to get comfortable because of the terrible pain in my lower spine. The problem started at the beginning of this week when I was being woken up at around 5 AM with back pain and not able to get back to sleep. As the week has progressed it has steadily got worse. But the constant unrelenting pain all through the early hours of this morning was far worse than it had previously been and when you can’t get to sleep and can do nothing but grit your teeth the minutes seem like hours.

Although I can’t turn my head enough anymore to see the bedside clock there are certain events that occur that tell me exactly what time it is. So for example I always know when it’s 6 AM because I hear the central heating system fire up. But this morning that seemed a lifetime away and even when I did hear it start-up I groaned inwardly at the thought that I was still two hours away from my carer arriving. The next hour crawled along at a snail’s pace until eventually the bedside radio sprang to life signifying that 7 AM had arrived. With music and the persistent chitchat of the DJ to engage the mind the final hour passed slightly quicker although nowhere near as quick as I was praying it would. It was also colder as my constant attempts to bring my knees up to try and alleviate the pain had caused the duvet to slide off the bed. On top of this my eyes had started watering again and were stinging badly causing me to screw my eyelids up tight. I breathed a huge sigh of relief when I heard the front door open. But even getting off the bed this morning was a very painful experience. First the act of lifting me into an upright position on the edge of the bed caused my back to protest even more, and secondly by stretching my legs over the edge of the bed set off painful cramp in my right calf and in both sets of toes, not the best way to start the day. But once I was up and soaking in a Radox bath my back pain gradually began to dissipate and within the hour it had gone.

These days I can barely move anything above the waist when lying horizontally so if a pain develops in my lower spine I am powerless to reposition myself, and lying in the same position for 10 hours is not doing me any good. All the time I was getting up in the night for bathroom visits I never had a problem. But now that I have grown weaker and am unable to get off the bed unassisted I am starting to hit problems brought about by lack of mobility. We’ve been experimenting with various types of pillow lately such as bolster, V shaped, and memory foam, to see if any of them improve my comfort and help get a better night’s rest. Unfortunately nothing so far has done the trick.

This latest episode was the last straw as by this time I had been running for almost 3 days on hardly any sleep and was therefore feeling absolutely shattered. The care agency made arrangements to have a GP make a house visit and after explaining the situation I was prescribed a slow release painkiller called Tramadol which is supplied in 50 mg capsules. Ann, bless her did all the running around picking up the prescription and collecting the capsules. So tonight I shall be taking 2 Paracetamol tablets followed by 1 Tramadol capsule (for starters but may need to tweak the dosage) and keeping my fingers firmly crossed in the hope that I get some much-needed pain-free sleep.

Birthday girl

In complete contrast to the above something nice rounded off the day – a visit from my brother and lovely sister-in-law who dropped in for a few hours before heading off into town to celebrate Chery’s birthday at one of the local restaurants. Happy birthday, Chery! It was really lovely seeing you again and I’m glad you liked the present. Thank you for the delicious home-made brownies. They went down a treat! Oh, and thank you Ali for helping out with the photos. It’s not often I have the opportunity of having a picture taken with both Jason and Chery in the same frame and you’ve captured a nice one.

Here she is, the birthday girl! 🙂

With my lovely sister-in-law, Chery




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