Well I'm new to this so treat me kindly. I'm not going to be a regular blogger but just when I think I've got something to say. Please feel free to comment on anything I write.
It is now 2 weeks since I took delivery of my Levo C3 stand up powered wheelchair, and I thought I'd give you an idea of how things are going.
Having taken delivery of the chair on Monday afternoon, I then had to go out on the Tuesday and Wednesday, so didn't get the chance to really use it until the Thursday.
My carer helped me into it, after she had got me up in the morning. Whenever you get a new piece of equipment it takes a bit of time to get used to it, and with a new wheelchair, the seat is slightly different, the wheels are in a different place, the arms are higher or lower, and all these little things mean that I need to modify how I do my transfers to get me into the new chair.
Anyway once I'm in the chair, I go to have breakfast. Again the height of the chair in relation to the table is slightly different from what I am used to, so this means I have to slightly modify how I eat my breakfast. Its amazing how different it is buttering your toast when your sat slightly higher than you're used to.
After breakfast, mum puts my trainers on, which I need to wear when I stand. These give me more support to my feet and especially to my heels. Because of the stiffness in my ankles which has developed as a result of sitting in my wheelchair, when I stand it is difficult to get my heel flat to the floor. My trainers give me the right support, otherwise I would need some sort of orthopaedic wedge to go under my heel.
I then need help with putting the knee supports into place. This is the one draw back with the chair. In order to stand you need to fit the knee supports to hold the knees firmly, so that they don't buckle when standing. However, if you're sitting in the chair it is not possible to put the knee supports into position, or take them off, yourself. This means that once they are in place to hold my legs and knees for a stand, I would have to then leave them in place until someone could take them off. This would mean that at any other time my legs are tied into a fixed position, which would restrict my ability to move.
The knee supports are permanently fitted to the chair, and have to slide out before being positioned just below the knee and locked into place. The locking position is pre-set based on my height and my position in the seat, and in theory, you should just be able to slide the knee supports in and they should lock automatically. In practise it takes a bit of jiggery-pokery to get them to lock in but I guess that its a case of getting the knack of how they fit.
Then its just a case of putting the chest strap round me. This fits under my arms and across my chest, and has a normal safety belt fastening.
From there its just a case of standing. At first I was standing for about 5-6 minutes, but all last week I stood for 10 minutes each day. It doesn't take much effort on my part as the chair moves to the standing position, supporting most of my weight. It is only once I am pretty much upright that I start to take the weight through my legs, and begin to weight bare.
The actual motion from sitting to standing, and standing to sitting, is very similar to the motion that a normal person standing up, or sitting down, would use. I can control the speed at which I rise to a standing position, with the joystick.
Sitting..
Up....
up....
and away.
Usually, I get almost up fully, and then have a rest, and let my legs get used to the stretch and weight, before straightening up a bit more. I tend to do this 2-3 times before I'm up fully. I can also tilt the vertical angle of my stand, to take some of the pressure off my knees on the knee supports, and also to ease any tension in my lower back.
I tend to spend my time standing looking out of the window, watching the world go by. It helps distract me from any effort involved in the stand, and helps pass the time. This morning I had the excitement of watching the bin-men collect the paper and food re-cycling boxes, up and down the road.
I can still drive round in the standing position, but to be honest it feels very weird and I need a bit more confidence before I do this much. The chair automatically compensates when you're standing so that you can't go about to quickly, in order to maintain stability. However you can adjust your speed to suit.
Once I have stood long enough, I lower myself back to a sitting position.
Following a short rest, I usually transfer out of the Levo and into my normal wheelchair. The Levo is about the same size as my other chair, a Viper S, but I find it less easy to drive round the house, and it is very difficult to get in and out of the bathroom.
It is probably just a case of getting used to the fact that the Levo has 6 wheels, the middle pair of which has the power go through them and therefore controls direction. These wheels are directly under the seat. This differs from the Viper, which has 4 wheels, and it is the rear two which has the power and control direction.
Its only a relatively small difference but the two chairs drive and turn in quite a different way.
The standing itself is quite easy, with the chair taking most of the effort of standing away from me. In that respect it is very different from the standing I was doing at the National Hospital for Neurology and Neurosurgery, (NHNN), with the physiotherapists. There I was using a standing frame, and having to put a lot more effort into standing up, and not actually getting myself up so well. Certainly, I wasn't getting my legs so straight, and as my upper body was less supported, I couldn't get this straight, without one of the physio's actually pulling my shoulders back.
I don't find that I'm getting on my feet, and that its a struggle to stay there, and I'm not finding that my breathing becomes difficult, as it was at NHNN.
Although I'm only using the chair for a short time, this will increase, and the length of time I standing will increase, as I build up more tolerance. My physio, who comes bi-weekly, was very impressed with how I am standing already, and feels that I am getting a lot of weight through both my feet and legs.
So overall, I'm very happy with the Levo C3 stand up powered wheelchair, and glad that I found a solution to standing at home. Although standing is tiring, I'm really enjoying it, and its worth the effort. I hope the pictures give an impression of my standing, but I'll apologise for the quality. I will do a video at some point, so you can see the actual stand and sit motion in action.
Before I write anything else, I'd just like to say a huge thank you to all of you who read my last blog, "Myositis Awareness day." I had an incredible response, with lots of very nice, positive comments, and with people sharing it with their friends and families.
I've watched Myositis Awareness Day grow over the last few years, and this year the response from all round the world was tremendous. There's still more that can be done, as currently much of what is done is driven by individuals, rather than by organisations there to promote myositis.
All who participated in the day, should be very proud of their efforts, and encouraged by the response.
And so to today's blog.
I am 1 mtr 85 cm tall, or 6 ft 2 inches in old money. I'm used to being one of the tallest people in the room, and being able to look over peoples heads in a crowded room. People would look up to me, literally, when we were having a conversation.
Being in a wheelchair changes all that. I now hate being in a crowded room, because all I get to look at are peoples back sides, or belly's, neither of which are particularly good at conversation. If people do talk to me, they do so from standing up, which means I have to look up at them and very quickly develop a sore neck. It's very rare that anyone will think of sitting down to talk to me at my level.
Conversations go on, literally, over my head, which I'm not part of, even if the participants think I am.
As many of you will know from my previous blog's, I have recently taken delivery of a Levo C3, stand up powered wheelchair. For the first time in 5 years I can now stand up, using the chair, at home.
Every morning, after breakfast, the first thing I do is to spend sometime standing up. I'm currently building up a tolerance to standing as its not something I have done for so long, but currently I'm standing for about 10 minutes.
But what I've really noticed is how different to world is, when you're stood up.
Suddenly, I'm getting a different view around the house, and out of the window. I'm able to look down on things, and view them from a different angle.
View out of the front window - stood up
View out of the front window - sat down
View into the kitchen - stood up
View into the kitchen - sat down
View out the patio doors -stood up
View our the patio doors - sat down
So not only am I getting a potential health benefit from standing, and I feel better physiologically because I can stand, but I'm also getting a different view of the world.
Its only a small thing but it all goes to help. I can now, again, stand up to my full height, and see the difference it makes.
Today, the 21st September, is Myositis Awareness Day. The blue ribbon is the symbol of this day and of www.myositis.org.
Myositis covers a number of conditions that can effect people of all ages. These conditions are chronic, debilitating and often progressive. People with these conditions have severely weakened muscles, which can lead to problems doing everyday tasks, and often leave them unable to do relatively simple things, most people take for granted. Due to the effort of doing things most people with Myositis suffer from fatigue. People are often in pain and have sore muscles and joints. There is no effective cure or treatment for these conditions.
I have Dermatomyositis, which I was diagnosed with in 1983 when I was 17, and Inclusion Body Myositis, which I was diagnosed with in 2000 at age 34. Due to having these conditions, this has also lead to me having the following conditions, either as a result of secondary conditions, cause by having Myositis, or as a result of the medication that I need to take to control my Myositis:
Raynauds
Limited
Cutaneous Systemic Sclerosis Overlap
Steroid
Induced Diabetes
Pulmonary
Fibrosis (NSIP Stable)
Hypertension
(Acute
on) Chronic Lipodermatosclerosis
Lymphoedema
Due to the progression of my conditions, I am now unable to walk or stand, and have been in a wheelchair since 2008.
The best way I can think to describe the condition to you is to tell you about a normal day in my life and the limitations that these conditions have imposed on me. (This idea isn't original, and the credit for it must go to Steph Hicks, who has written a brilliant no-holds barred account of her day across the course of this week.)
My day currently starts at 6.45 am, when my carer come in to help get me up. I cannot move when I am in bed, and simply lie on my back. Because of the fact that I cannot change my position in bed, I am at risk of getting bed sores, which are open sores on the skin caused by the pressure of the bodies own weight on the mattress on the bed. Once a sore develops it is a long and painful process for it to heal.
Also at night, I use a BiPap machine. Due to the weakness in my diaphragm, I cannot breath properly at night, when I am lying down. This means that I am unable to exhale the CO2 from my lungs, which then limits the amount of oxygen I can inhale. This results in lower oxygen saturation of the blood, and means that oxygen isn't circulated round the body sufficiently. This causes me not to sleep well. The BiPap machine, blows air into my lungs every time I inhale, meaning that I am getting good levels of oxygen into my lungs and therefore the right amount of oxygen into my blood stream. I wear a mask which is strapped to my head, and which is attached to my nose.
Also to help my diaphragm, work more efficiently I sleep in bed with my head and chest, raised up.
Because of the fact that I cannot move in bed, I like to get up early, as one way of trying to help prevent sores.
My carer comes in, and having said, "Good morning, " she puts on her gloves and proceeds to take the duvet off me. I can push the duvet down the bed slightly, but as my arms and shoulders are weak I cannot move the duvet back up if I get cold. Therefore I tend to leave the duvet pulled up, unless it is particularly hot.
After removing the duvet, the carer will then swing my legs out of bed, as I cannot do this myself. Once my legs are over the side of the bed, I will raise the head of the bed, to a fully upright position, and my carer will sit me up straight on the side of the bed. This involves her grabbing my shoulder and arm, and pulling me up straight. If she doesn't do this quickly enough, once the head of the bed is upright, I just slip over backwards, because of the weakness in my core muscles, which will mean banging my head on the wall, behind my bed. Once I am upright, she just needs to ensure I am stable, with my feet on the floor, so that I don't topple back, or worse, topple forward onto the floor.
My carer will then put my slippers (yes I know, very old man) on my feet and then position the shower chair along side the bed. Once this is in position, and the bed had been adjusted so that it is flat again, I lean over whilst my carer positions my transfer board underneath me, and onto the shower chair. If I lean over too far, I risk toppling over, but not leaning enough, means that the board doesn't go under me sufficiently, and then I cannot move.
Making sure all the brakes are on, on the shower chair, and with the carer holding the shower chair to stop it moving, I the begin to shuffle across the board from the bed onto the shower chair. Once I am fully in the shower chair, I again have to lean over whilst my carer pulls the board out from underneath me.
When you have been in one position for a long time, whether bed, wheelchair or armchair, and you can't move, when you do start to move especially when the movement is quite strenuous, this can lead to involuntary farting. Even after 5 years, I still find it highly embarrassing to find myself farting, sometimes quite orchestrally, in front of my carers.
Once this is done, the brakes taken off and the arm of the shower chair, securely put in, my carer will wheel me to the bathroom.
The first thing we do in the bathroom, is that I am pushed over the toilet. Once I am in position and the brakes are put on, my carer will then proceed to take my pyjama trousers off - I don't wear a top. This is achieved by me leaning from side-to-side, and her pulling my trousers down. This normally leaning to each side 3 to 4 times.
Once she has taken off my trousers, she hands me a urine bottle, and I can get on with my morning business.
When I have finished, I give the carer a call, and she comes and gets the bottle, and gives me my bottom wiper and some toilet paper, if this is required. Once I have cleaned myself, she lets off the brakes, and I move to one side, which allows her to empty my bottle, rinse in out and then flush the toilet.
She will then position my long handle sponges and shower gel, so that I can reach these once I am in the shower. I then clean my teeth, using an electric toothbrush. To do this I have to put the arm holding the brush on the side of the sink and then raise the wrist up using my other hand, as I do not have the strength left to be able to simply raise the one arm on its own.
When I have cleaned my teeth, I run some water in the sink to clean it, and then run some more water for my carer to wash my legs. I have a tap which works on a sensor which means I do not need to lean right across the sink to turn tap levers or handles.
My carer will then come and wash my legs using Diprobase cream, and then rinse them off. I cannot use soap on my legs due to the (Acute on) Chronic Lipodermatosclerosis and Lymphoedema, which have caused issues with the skin on the lower half of my legs and feet.
Once my legs and feet have been washed, I turn on the shower and wait for the water to warm up, before pushing myself under the water. I use the long handle sponges to soap myself with and then sit under the water to rinse it off. It takes a bit of getting used to, using these sponges, but I can give myself a pretty effective shower using them. If I want to wash my hair I have to ask my carer to do this as I cannot raise my hands up, to do this.
Once I'm washed, I call the carer and she comes and starts to dry me off. The weight of towels is to much for me to be able to lift them and dry myself. Once they start to get wet then they just become a heavier, and more impossible weight.
We usually have a set routine to drying me, so that we both know how it is going to be done, and so that we both know how we need to move to get me dry. Getting my fully dry is essential, not only because if I'm not then all my clothes get damp, but also if I'm not fully dry this can lead to sores developing, and fungal infections.
We start with the head and face, followed by the neck, chest and arms. She will then dry my legs and feet, making care to dry between the toes. She then does the tops of my legs, including in my groin, another area that is very important to ensure is dry. To do underneath my legs, my carer has to lift my leg with one hand whilst rubbing under the leg with the other. She does this for both legs and then moves round the back. She dries my back, and then moves down to my bottom. She has to take care not to rub my bottom too hard, as this is an area with great potential for sores. We then do under my bottom, by me again leaning from side-to-side, and her sliding her hand under me.
Not only does my carer need to dry me but she also needs to ensure that the shower chair is dry as well, otherwise I'd simply sit back on a damp seat.
Once I'm fully dry, she applies Cavilon cream to my bottom, to help prevent sores, Vaseline into the creases between my legs and stomach, and some deodorant. She the puts a shirt on me, as I cannot do this on my own. I help do up some of the buttons at the bottom of the shirt, whilst she does the top buttons up. I am to weak to be able to lift my hands up to manage the top buttons, and my hands are to weak and bent up, to be much use doing up buttons but I try to help.
When the shirt is on, my carer creams my legs with Diprobase, before putting on my pressure stockings. These are made-to-measure stockings that fit very tightly to my legs, below the knees, which was designed to help aid circulation in my legs and stop them from swelling, due to the inactivity of being in a wheelchair.
When these are on, and its a struggle to get them on, my carer starts to put my trousers on. I don't wear under-pants, simply because during the day, if I need to pee I have to do this sitting down in my wheelchair, using a urine bottle. If I had under-pants on these would simply get in the way.
The trousers are put over my feet, ensuring that the fly is at the front, and then pulled up over my knees. I then pull them up as far as I can, and then I hold my "equipment" up, whilst leaning from side-to-side whilst my carer pulls them up from behind. Once the are up sufficiently she grabs the waist band at the back, and on the count of 3, I lean right forward and she pulls them up as far as they will go.
The carer will then put a jumper on me if I need one.
The brakes are taken off the shower chair and the carer moves this along side my wheelchair. She removes the arms from both chairs, I then lean over so she can put the transfer board underneath me. Then with the brakes applied, on both chairs and with my carer holding the shower chair, I start to shuffle across into the wheelchair. When I am fully across, I again lean over so that she can take the board from underneath me. She then puts the arm back in my wheelchair, and I am safe to go.
On the way out of the bedroom I collect my glasses and phone.
From my carer coming in to the house, to her cleaning up and leaving, has to take 45 minutes. This is the time allocated to me by the local social services, for a carer to perform all these tasks. In addition to all of the above, she should also get my breakfast, but as mum is with me she will get my breakfast for me.
I then take the majority of my tablets for the day.
After mum has showered and dressed, she gets breakfast, which normally consists of a glass of orange juice, a piece of toast with Flora and Marmite, and a cup of tea.
I have to use a glass or cup, with a handle that is big enough for me to get my fingers into. As my hands are not very flexible, and quite bent up, I need a handle I can get my hand into and grip properly. However, the glass or cup cannot be to big or heavy, as it will be to heavy for me to lift. It also cannot be to full as again this would make it to heavy to lift, or increase the chance of me spilling the drink due to the effort of lifting it.
I also use "squeezable" Marmite as this makes it easier than trying to undo lids and cope with getting the contents out of a normal jar.
In order to get food or drink up to my mouth, I rest my right elbow on the arm of the wheelchair, holding the cup or food in my right hand, and then holding my right wrist with my left hand, push the hand up towards my mouth. A combination of lifting and bending forward, usually means I can feed myself.
After breakfast, mum puts some nose drops in for me as I cannot reach up to do this myself. Some where along the way I have pushed the bone in my nose over to the left hand side of the nose, blocking my left nostril. In order to try to keep this nostril as clear as possible, I have to have daily drops applied.
On a normal morning, I will spend most of my time on my computer, checking my emails, responding to Facebook, reading the news and looking up anything I need to know. I have to ensure that anything I need is close at hand, as reaching for things away from the body is very difficult. The weakness in my arms and shoulders means that I cannot reach very far away from myself, and the further I reach the less strength I then have to pick anything up. So this means I need to be organised where I put things, or I need to ask someone to get things for me.
Also my shoulder muscles are so weak that I cannot raise my arms against the force of gravity. This means I cannot reach up for any thing. Everything I need has to be at about waist height, and that's waist height when you're sat down.
As I'm in a wheelchair, I cannot reach down to pick things up off the floor. I have long handle grabbers placed round the house to help me pick things up off the floor, but these are only any use if the thing I am picking up is light weight or not completely flat to the floor. Picking up the post can be a real challenge.
About 10.00 am I will usually have a coffee. I can make this myself, but if mum is here she will do it for me. Reaching into the kitchen cupboards to get tea bags or coffee, can be difficult unless these things are positioned so they are easy for me to reach. Similarly, the milk in the fridge needs to be easy to get to. I only have 1 pints cartons of milk as anything larger is just too heavy for me to lift.
The kettle I have is a Tefal Express Boil, which with the push of a button, dispenses enough near boiling water for one cup of tea or coffee. All I do is put the cup under the spout, press the button and out comes the water. I always try to ensure that the reservoir on this filled up if I am left on my own, as I cannot fill it myself.
My carer returns between 11.30 am and 12.00 midday. During this call we transfer from my wheelchair to the commode, using the transfer board. This involves getting the two chairs side-by-side, removing the arms, me leaning over whilst the carer puts the board underneath me. I then shuffle across to the commode and the lean over whilst the board is taken out.
Again, because I've been sat still in the wheelchair, the transfer will involve a good deal of farting. However, sometimes, without warning, the effort of moving can cause a bit more than just wind to escape - which then leads to a far greater clean up job.
After taking off the brakes and putting the arm back in the commode, I am wheeled into the bathroom and over the toilet. The brakes are applied, and my carer removes my trousers in the same way that she did my pyjamas in the morning.
I then do my business, after which the carer comes back and helps me clean myself, as she did in the morning. After washing my hands, we go back into my bedroom, and she puts a clean pair of trousers on me, again using the same technique as this morning to pull them up.
And then I transfer back into the wheelchair, using the sliding board.
Video of my transfers
The carer should then get my lunch, but again as mum is with me she will get this. This call is supposed to be a 30 minute call.
Lunch is usually a snack, with a cup of tea.
After lunch, I spend some more time on the computer doing my blog, or answering correspondence. When I have looked at the news again, rechecked my emails and Facebook, I usually switch of about 3.00 pm.
Mum will help me transfer into my armchair, using the transfer board. I will do this directly from my wheelchair, as I can adjust the height of the armchair to suit whatever chair I am coming out of. Once I am in the armchair, I can only stay in one position, as it is not possible for me to move. However it is a riser recliner chair, which does mean that I can change the position of the chair.
It is important, whether in the wheelchair or armchair, to ensure that I do not stay in the same position to long. I need to try to move the back or seat to change my position every 20 minutes or so, to help prevent sores developing.
I usually have a cup of tea and either read my book - a Kindle, as even paperback books are generally too heavy for me to hold - or go to sleep. Or both, but not at the same time.
If I need to go to the toilet, I then need to transfer back into my wheelchair, go to the bathroom, before coming back and transferring back into my armchair.
At about 5.50 pm, I transfer back into my wheelchair, go to the bathroom, and get ready for dinner at 6.00 pm. Although I have a great love of food, I have nowhere near the appetite that I used to have. I can no longer eat hot and spicy food - I used to love a Jalfrezi - as this has disastrous effect on my bottom, and means lots of dashing to the toilet, which really isn't an options, with all the transferring involved.
A Jalfrezi
Apart from very basic snacks, it is very difficult, and exhausting to try to prepare my own food. All the reaching, chopping and mixing is very hard work. When I then have to lift or move hot pans it just starts to become dangerous. Fortunately, mum cooks for me at present.
My food needs to be cut up for me, as I do not have the strength to do this myself. Also as I use a fork in one hand, but need to support the wrist with my other hand, it is impossible for me to use both a knife and a fork.
When I have finished my main course, I usually have a yoghurt as I have found that this has the combined effect of settling my stomach and keeping me regular. I don't particularly like yoghurt but have found that the Activia Rhubarb Yoghurt's are alright, and these wer0e recommended to me by my GP, for helping with my stomach.
After dinner, I read for a little while and the about 7.15 pm, mum helps me transfer out of my wheelchair and onto the commode. She then wheels me into the toilet, helps take my trousers off and then leaves me to it. When I've finished, and have cleaned myself and washed my hands, we go back into the bedroom. Mum puts some Cavilon cream on my bottom, and then helps me put my pyjama trousers on.
Mum then helps me into my armchair and I spend the evening watching television. After a cup of tea about 9.00 pm, mum often goes off to bed about 10.00 pm, and I wait for my carer to arrive.
She comes in between 10.30 pm and 11.30 pm, which is fine by me, as I don't want to be in bed to long.
She helps me transfer back onto the commode, using the transfer board, and then into the toilet, where I use a bottle to have a pee. After washing my hands, I'm wheeled into the bedroom, where the carer takes my pressure stockings off. She then applies a paraffin based cream to my legs, which helps remove any dead skin, and then puts on Tubifast stockings, to stop the paraffin cream getting all over the bedding.
She then takes off my jumper and shirt, by pulling these over my head and then off my arms.
I am then moved beside the bed, the arm of the commode is removed, I lean over and the transfer board is put under me and onto the bed. I then start shuffling over, onto the bed. When I am there, I lean over and the board is pulled out from under me.
The carer then lifts my legs and feet up, and swings them up onto the bed. At the same time I go over on my side, with my head on the pillows, and then roll onto my back, so that I am lying straight on the bed. The carer then pulls my pyjamas to ensure that there are no creases under me that might cut into my skin during the night, and cause sores to develop.
With the carers help, I put on the mask for my BiPap machine, and we test that this is working properly, before putting a neck pillow, round my neck.
I then lower the head of the bed so that I am flat enough to sleep but with my head raised enough that I can breath properly - usually about 35 degrees. I raise my legs up, to assist the flow of blood in my feet and lower legs.
My carer just makes sure I am comfortable, and moves my legs if they need it and then puts the duvet over me. She finishes writing the book up, with what she has done, and then says "Goodnight," turns the lights off and is gone. That's another 30 minute call.
And usually, I'm tired enough that before my carer has pulled off the drive, I'm asleep for the night, hopefully replenishing the batteries for tomorrow.
So that's a normal day, for me. I'm quite lucky. A lot of people with Myositis have things a lot worse, but I just thought that this would give you an idea of what I have to go through on a daily basis. And what impact Myositis has on my life.
You will have noticed that I have skipped forward 25 years to 2nd September 2008. This is the next and last significant September milestone.
On Tuesday 2nd September 2008, I was finally discharged home, from hospital and rehabilitation, in a wheelchair after just over 5 months in hospital.
I had gone into the Royal Free Hospital, in Hampstead, North London, to have a regular course of treatment. I had been going in for regular treatment for approximately 5 years.
Initially I had been having Intravenous Immunoglobulin (IVIG), which had been very effective in controlling my Dermatomyositis (DM). However, as the DM became less active and my Inclusion Body Myositis (IBM) became more active, the IVIG became less effective as a treatment, and towards the end of having it was even perhaps doing more harm than good. The IVIG was stopped and in its place I was given 3 days of Methylprednisolone (IVMP).
When these regular treatments had started, I would drive to the hospital each day, getting there about 7.00 am, so that I could get a disabled parking space, have my treatment and then drive home in the evening. Although this meant long days, and a drive both ways through the middle of London, it was worth it to be able to sleep in my own bed.
However, this had become to hard and for the last 6 months prior to this visit, I had driven to the hospital, early, on day one, stayed in overnight, and then driven home after the treatment had finished on day three.
So it was on Monday 17th March 2008, I parked my car in the hospital car park, and made my way to the ward.
My physical condition at this point was very bad. My walking was a real effort. I could barely get out of a chair, even with it being raised, and once I was on my feet, I had to really force myself to stand up straight. I couldn't get up even very low steps, or kerbs, and constantly had to watch where I was walking for fear of falling. Although I was only using one walking stick, this was out of stubbornness, and realistically I should have had a frame or walker.
When I got to the ward, and had been checked in, I waited to see a doctor before the treatment could start. Previously the IVIG, treatment had taken up to 8 hours each day, provided things ran smoothly, but invariably there would be problems with my cannula's failing, so treatment could take much longer. With the IVMP, treatment each day took a little over 2 hours, which meant there was a lot less chance of cannula's failing, but did mean there was a lot of sitting round.
The cannulation team came round and put the needle in my arm, and then sometime later the doctor arrived. As usual she did a quick examination but noticed that I was very much weaker than when I last saw her 6 weeks earlier. Up to now I had been having treatments of 250mg of IVMP per day. We agreed that this was no longer being effective and decided to try 500mg of IVMP per day, for three days, and see what happened. We both knew that we had to do something, and it was worth risking this higher dosage.
And so for the next 3 days, I spent a 4 hours, due to the higher dose, having treatment each day, and then would spend the rest of the time reading the paper, walking round the hospital or just resting in a chair.
On the Wednesday, the final day of treatment, I wasn't started until after my consultant had seen me in the morning. He was concerned about my condition, and the increasing weakness, but thought that trying the higher dose of IVMP was worth it.
About 4.00 pm, having finishing my treatment and having had the cannula removed, I walked out of the ward, intending to go to my car and drive home. As I got to the end of the corridor, and was waiting for a left, I started to feel as if I was going to collapse. I said to my mother, who had come to sit with me for the drive home, that I thought I needed to get back on the ward.
I got back to the ward and sat down on my bed. I explained to the nurse how I was feeling and we agreed that I should stay in overnight and see how I was in the morning.
As the evening progressed, the more I moved, the more difficult it was becoming. During the evening, I remember going to the bathroom and sitting on the toilet, and then having to ask two male nurses to help me stand up from the toilet, and help me back to bed. That was the last time that I walked on my own.
In the morning, when I woke up, I couldn't get myself out of bed, or even to sit on the side of the bed. I had to be helped up and washed, and then hoisted to use the toilet, and into an arm chair. And that's where I spent my day.
I expected to regain my strength and to eventually be able to walk again, but thought it might take a couple of days.
However, things didn't improve, and I needed to be hoisted to get me out of bed and into a chair, where I would spend my day, before being hoisted back into bed at night.
The following Wednesday, my consultant came round, and we discussed what had happened. He admitted that he was at a lose to know what to suggest to help, but that he would go away and find out from some other specialists what, if anything, could be done. I asked if in the meantime I could have some physiotherapy input, to try to get my legs and body working again.
I was then moved from the ward I had been on, to a cardiac ward, which shared some beds with the Rheumatology department. This was based on the top floor of the hospital, and was south facing. As the hospital was slightly raised on a hill, this meant that I had amazing views over London. I could see east to the Thames Barrier, south to the TV mast at Crystal Palace, and the view to the west was restricted by the side of the building, but I could still see as far as Battersea Power Station. It was this view and the changing skyline of London that kept me going over the next couple of months.
The following Wednesday, I was really unhappy. Nothing had happened, apart from the change of ward, since the previous Wednesday. I had not seen any doctors and had not seen anybody from the physiotherapy department. When my consultant came round, I had a right go at him. I told him that unless he started doing something I felt that I was never going to get out of bed on my own, let alone get out of the hospital. Although he looked a bit shocked, he certainly got the message.
The next day I had a visit from the physiotherapy team, and they agreed to come and see me a couple of times a week. I explained that I did not feel that was enough and I needed to be seen at least daily, if I was going to have any chance of walking again. They agreed to come as often as they could but would not really commit themselves.
The following Wednesday, I had seen the physiotherapy team twice, and they had tried to get me standing, using a frame that would support my chest and arms, at shoulder height. Although I had been able to stand, for a very short time, there was no way I could walk with this.
When I saw my consultant on his rounds, I firstly apologised for shouting at him the week before. He said that I had been quite right to do so and that by doing that it had made him realise how serious things were, and also my determination to get walking and back home.
He explained that after talking to other doctors and to the neurologists at the National Hospital for Neurology and Neurosurgery, they all felt that there was no drug based treatment that would help get me walking again. The best thing was for me to have a period of intensive physiotherapy input, but that could not be provided at the Royal Free. He had found a Neuro-rehabiliation Centre in Wimbledon, called the Wolfson Centre, which would be the ideal place for me to go for this treatment. Not only was it able to provide the best treatment but also it was closer to home. The only downside was that I might have to wait up to 3 months to get admitted to the Wolfson Centre as places were so limited and in such high demand.
We agreed that this was the place to go, and that in the meantime, he would put pressure on the physiotherapy team in the hospital, to see me more often. He had already sent off the referral to the Wolfson Centre before coming to see me.
It was about this time that one of my friends retrieved my car from the hospital car park, and drove it home.
Over the next couple of weeks I was seen almost daily by the hospital physio's, and using a mobile standing hoist, they managed to get me on my feet and walking, to a fashion. There was no way you could have called it "real" walking, as I was lent forward, and almost walking from a doubled over position, but at least I was using my legs. Much of the time I was still being hoisted in and out of bed, as there was no alternative, unless 2 or 3 nurses were about to help and support me, which wasn't often.
One afternoon I was taken by hospital transport to the Wolfson Centre in Wimbledon, to see what they had to offer and to undergo an assessment by the doctors. It was very much like an interview where they were assessing your suitability to go there for treatment. As there was a limited number of places - I think less than 30 - these were really sought after, and the medical team needed to be sure that anyone going there would benefit from the treatments and take advantage of the opportunity afforded. As I left they told me that they would be happy to take me as a patient, but that there could be a 12 week wait to get admitted.
So then it was just a question of waiting for a place to come free at the Wolfson Centre. My physio sessions continued, but progress stalled and over time, despite me pushing, these went from mostly daily to a couple of times a week.
I spent my days reading the newspapers, watching the view over London, chatting with the other patients and reading books. Memorably I finally got round to reading Philip Pullman's, His Dark Material trilogy, which I really enjoyed.
Mum came to visit me almost daily, which meant a long journey across London using the underground. She never complained once.
One day at the end of her visit she asked me if there was anything I wanted, the following day. For some reason I had a real craving for a packet of Walker's Salt and Vinegar Crisps, so asked her to get me a packet. After she left, I kept thinking about this packet of crisps and how much I was looking forward to them - which is strange because a couple of hours before I hadn't even thought about them.
When mum got home she rang me, as normal to say she was home, and I reminded her about the packet of Walkers Salt and Vinegar Crisps, and mentioned how much I was looking forward to them.
The next morning, mum rang me, as she normally did, to say she was leaving and to say what time she expected to get to the hospital. I again reminded her about the crisps, and she assured me that she hadn't forgotten that I wanted a packet of Walkers Salt and Vinegar Crisps.
I knew it would take mum at least a couple of hours to get to the hospital, so I had plenty of time to anticipate eating the crisps and the enjoyment I'd get from their flavour.
When mum came in to the ward, she must have known how much I was looking forward to the packet of Walkers Salt and Vinegar Crisps, as she grinned and told me she had got them.
She sat down and opened her bag, and pulled out a packet of Walkers Cheese and Onion crisps. I could have exploded. How could she get something so simple so wrong. She was immediately sent down stairs to the hospital shop to buy the correct crisps.
But that's just an example of how stupid little things take on such huge importance when you're stuck in hospital, and not able to move about.
At the beginning of June, I was transferred to Mayday Hospital in Croydon, as this was much nearer home and also nearer to the Wolfson Centre. It was nice to have a change of scenery and I knew that this would make things easier for mum.
I meet some of the doctors who had treated me here years ago, before they had transferred me to the care of the team at the Royal Free. They were interested to learn of the changes that had happened and would regularly send student doctors to see me, to learn about my conditions.
I had very little physiotherapy input, although I was given my sliding board, so I could now transfer without being hoisted, and I was also given my first wheelchair.
Finally, on the 8th July, I was transferred to the Wolfson Centre. This was a residential neuro-rehabilitation centre, mainly used for people with severe head injuries or strokes. Here patients had access to physiotherapists, occupational therapists, psychologists, speech therapists. There was a special kitchen equipped so that they could train people to look after themselves when they got home, and with supervision could learn how to cook safely. There was even a fully equipped flat that patients could use just before going home, and bring there families to stay with them, in order that they could try out living independently, but knowing that help would be at hand if it was needed.
The Wolfson Neuro-rehabilitation Centre
At the Wolfson Centre, everything was geared to trying to get you home, with the right amount of equipment and support, and to help you make the transition from a long stay in hospital to being at home. Once you got up in the morning, you weren't allowed back to bed, unless you were actually ill, in which case they would send you back to hospital. You had to take responsibility for taking you drugs, although they made sure that you did. You would eat your meals in a dining room, sat up to a table. There was a large communal room where there was a big television, but you could also play games, or read a book. There was also an outside terrace where you could sit out.
But the main purpose of being at the Wolfson Centre was to try to get you as mobile as possible. I had daily one-to-one sessions with the physiotherapists, a gym session of general exercises and stretches, where patients would do as much work on their own, with or without equipment, and daily sessions with the occupational therapists.
The Gym
It became clear, pretty early on that I wasn't going to be able to stand or walk again. If this was ever to have been achievable then I really needed intensive physiotherapy input as soon as I was unable to walk. In losing two weeks, when nothing was done we had probably lost the window of opportunity, but realistically even if they had got me walking, it would have only been a temporary respite, before I was back in a wheelchair.
Having accepted this we then had to work towards getting used to doing things from a wheelchair, and using whatever equipment was best for me. I had a great Occupational Therapist, called Amber, who helped me immensely, learn how to adapt to life in a wheelchair. She worked really hard to get the right equipment for me to use at home, and took me home on a couple of occasions to discuss what adaptations would be best within the house, and to see how the equipment she had provided could be used at home.
When I had first gone into hospital, the football season was still underway, and I thought, "I'll be home before the end of the season."
I then thought, "I'll be home before the Champions League final," and then, "I'll be home before the FA Cup final."
When this didn't happen, I thought, "I'll be home before the start of the European Championships," and then it moved to, "I'll be home before the final of the European Championships."
When this didn't happen, I thought, "I'll be home before the Beijing Olympics start," but by the time these had started I already knew that we were working towards a discharge date of the 2nd September. I managed to watch lots and lots of the Olympics. Amber is Australian, so there was lots of banter between us about how well our respective countries were doing, and how many gold medals they were winning.
I was sad to leave the Wolfson Centre because there were some great patients there, who had been through a lot and were fighting hard to win their lives back. The staff had been excellent, and although my goal to walk hadn't been achieved, we had given it the best possible chance, but I was a well prepared for my life in a wheelchair as I could be.
But to be honest I was sick of being in hospital, or rehab, and just wanted to get to my own home. I always think that being in your own home, surrounded by your own things just helps make you feel better.
It was a big adjustment to be home, but the work that we had done at the Wolfson Centre, and the equipment they had provided, helped make this easier. They had also put in place a care package, for carers to come in 3 times a day to help me, which has been invaluable.
I can honestly say that on the 2nd September 2008, I could only agree with the old saying, "There is no place like home."
This blog follows on from my previous blog, "3rd September 1982".
Having left the Royal Navy in Feb 1983, I immediately took a job at a local garden centre. I had worked here at weekends when I had been at school, and knew the boss and his son's - who I had been to school with - very well.
It wasn't a long term career move, but I knew that I needed time to find out what was happening to me and to try to get myself back on track.
The job involved doing anything that I was asked to do. I could be serving customers, re-stocking shelves, unloading delivery lorries, literally what ever needed doing. It wasn't particularly strenuous work, or very taxing mentally, but at least I was still earning money.
Once I was out of the pressure and physical demands of military life, things seemed to settle back to normal and I seemed to be very much better, and more able to cope. But this was only a temporary respite.
I had always suffered from Raynaud's, a condition that causes the extremities of the body to change colour and become very cold, due to poor circulation of the blood. This can lead to the hands and feet, and in extreme cases - like mine - knees, elbows, chin, ears and nose, changing in colour to white, red and blue, due to changes in temperature. It can be very painful as the blood leaves the affected part of the body, and it becomes stiff and uncomfortable, and I used to describe it as my hands being "dead". But it can be worse as the blood comes back into the affected area and the sensation starts to return.
I had suffered with Raynaud's since I was very young. My mother also had it, and we just thought it was us, and nothing particularly odd, as none of my sisters or brother were affected with it. I remember being in tears after being outside cleaning my football boots, because my hands had become so cold, and even worse after being out in the snow. But the worst part was coming back in and then having to resist plunging your hands into warm water, as this would send pain shooting up into your hands or feet from the shock of the hot water.
I was even known to have my hands go "dead" on very hot days for no reason.
I first discovered that this cold hand problem, was a recognised medical condition, when I was on parade one day, whilst in the Royal Navy. The inspecting officer noticed that my hands were blue, and asked me why. I responded that it was just something I had always had and was probably due to bad circulation. He said it didn't look normal - very perceptive - and sent me off to see the Medical Officer. He took one look and said it was Raynaud's, but there was nothing he could do about it. So at least I now had a name for my technicolour hands and feet.
Anyway, back at the garden centre, although I seemed to be coping better physically, but my Raynaud's seemed to be worse than normal, and I was always having to wear gloves, to try and keep my hands workable.
A little while later, the skin on the palms of my hands started to become very dry. At first I assumed that this was due to the gloves drying out my skin, and stopped wearing the gloves, but it made no difference. The skin, particularly on my fingers would "crack" and my fingers would be covered in lots of tiny, paper-cuts, which were really sore. I would need to put plasters all over my fingers to stop these cuts getting dirty.
I started using cream to moisturise my hands, but as soon as I put it on, the skin just soaked it up and I needed more cream.
I then started to experience pains in my joints. It would start if I was standing for a long time, and then my knees would start to become sore and painful. Then I would find that if I was lifting - like bags of compost - my elbows and shoulders would become stiff and sore. Climbing stairs made my knees "click".
As time progressed, I found that standing would make my feet hurt, to the point where I had to sit down and take the pressure off my feet. It got to the point where first thing in the morning, I would swing my legs out of bed, but I wouldn't be able to put my feet on the floor, because it was too painful. I would slowly have to ease the soles of my feet onto the floor and gradually put more weight on them until I had got to a point where I could take the pain and stand. This could take upwards of 5 minutes before I could stand.
With the onset of the joint pain, I started to go to see my GP. He simply put it down to "growing pains" and said that I would grow out of it. As the pain continued and increased, I was given painkillers, and although these were effective at first, usually I was back to see him a week or so later, because the pain was back, only worse than before.
With the joint pain, came skin rashes. It would start with patches of dry skin on my shoulders, knees, elbows, and then spread to larger areas. I also had a rash on my scalp and my eye lids became very dry and flaky. The skin on my face and neck became very red
And then one lunch time, whilst at work, I was sat in the staff room - really an old shed, with an old sofa and a dart board - and just fell asleep. There was no warning, I wouldn't have said I felt particularly tired, but one minute I was awake, the next fast asleep. A couple of guys came in, saw me, and not wanting to disturb me left again. It was only when I woke up and realised that I hadn't eaten my lunch, and I was late back to work, that I found out how long I had been asleep.
This then became a bit of a pattern. Sitting down, and falling asleep without any warning. I started to find that I had no energy, and was tired even before the day had begun. Also my strength was declining. Carrying bags of compost for customers, was a normal task, but suddenly I started to find that I couldn't lift the bigger bags. As time went on, I started to struggle with the smaller bags, or with pushing trolleys with 3 or 4 bags on.
On top of this my appetite, which had always been very healthy, just disappeared. I had no interest in my food, which was unheard of.
So everything just started slowly but as time went on, everything became a little bit worse, and then quite a bit worse, until it all became really bad. I was by now making weekly visits to see my GP, who had no answers beyond giving me stronger and stronger painkillers, which only worked for a shorter and shorter time.
During the summer of '83, I went on holiday with my mum and sister, to an island in the Bristol Channel, called Lundy. It was a place we had often been to during my childhood and it held lots of great memories. There isn't much there but to go walking and to enjoy the flora and fauna, but it was a great way to get away.
Lundy Island
To give you an example of how isolated the island was from civilisation, we had been on holiday there, in the summer of 1974, and on returning to the mainland at the end of the holiday, we stayed, overnight in a hotel. During the evening, whilst listening to the news we heard that Richard Nixon, had resigned as president of the USA. We had heard nothing about Watergate, Nixon's resignation, and who the hell was Gerald Ford.
The island was only 3.5 miles long and 0.5 miles wide, so walking round it even with my declining strength wasn't to hard, if I paced myself. Early in the holiday, we went out for the day. It wasn't very hot, but it was sunny and there was quite a strong breeze off the sea. I was wearing shorts and a t-shirt, as I would do normally, and using sun-cream. That night, I woke up during the night, to find that my legs felt as if they were on fire. On pulling back the covers, the skin was a ferocious red, and painfully sore. I couldn't stand anything touching my skin.
I spent the rest of the night in great discomfort. Anyway I tried to lay, my legs would touch or rub on something, and I was in pain. The next morning the nurse on the island wanted to have me airlifted to hospital on the mainland, to be treated for burns. I refused to go as I didn't want to ruin everyone else's holiday, but had to spend the rest of the holiday, indoors or hiding from the sun, because the slightest ray of sun shine on my legs and I was in agony.
By the time we got home from holiday, my physical condition had taken a real nose dive. I had no appetite and no energy. Muscle was dropping off me and from being about 12.5 st, I had gone down to under 7 st, in about 6 months. My muscles, such as I had hurt, as did my joints. I was struggling to walk, and had little or no strength in my arms and legs.
Another visit to the doctors, and more painkillers, wasn't very satisfactory. So out of desperation my mother took me along to the GP's surgery and refused to leave until we got to see the doctor. (How embarrassing for a 17 year old boy). We saw the doctor and my mother told him, that we weren't moving until he did something to help me.
After much head scratching, I was referred to a local Rheumatologist, called Dr Hicklin, who I saw very shortly afterwards. I think as soon as he saw me and heard my story, that he knew what was wrong with me, and then started the barrage of tests.
I can't remember every test I had but I seemed to have a daily appointment for an x-ray, blood test, EMG, Echo-cardiogram, you name it I had it. Particularly memorable was the barium meal test, where I had to drink a glass of thick, chalky, emulsion type paste and then have my upper intestines x-rayed. Then followed the enema to push the same substance into my lower intestine for similar x-rays. Yuk, I'm glad that's never been repeated.
Having done loads of tests, in late August I was taken into hospital, where I stayed for the next 2 weeks. I was in a ward in an annex of the main General Hospital in Redhill. This ward was on the top floor and had a glass roof, which meant that on the hot late August days it was like being in a greenhouse.
I don't remember much about being in hospital, other than the fact that the ward was full of old men. A very strict matron was in charge of the ward, and she would tell me off for getting up in the night and going to the toilet on my own.
I had more tests, and then eventually, I had a muscle biopsy on the top side of my right thigh muscle. No body explained anything about any of the tests or the biopsy, and why I was having them. I remember being very nervous about the biopsy, even though I didn't know what was happening, but I just knew I was going to an operating theatre, and that was enough to worry me. As we were going down, the matron came out and spoke to me. I remember holding her hand, and that she came into theatre with me, and was still there holding my hand when we left the theatre. (What a sissy!)
The biopsy was fine. The surgeon made a 6 inch incision in my thigh and took what muscle he needed and closed up the wound, and told me not to walk on the leg for 24 hours. The whole time in theatre, although I was laying flat, I could see everything the surgeon did, in a big mirror that had been swung up onto the ceiling.
How different a biopsy was then, to what it is now. Since then I have had 3 other muscle biopsies. All the incisions are under half the size of the original one, and I could walk on my legs, later the same day.
I was discharged, and sent home with a big bottle of red tablets. I hadn't seen my doctor the whole time I had been there. I was told to take a handful of the red tablets 3 times a day - I can't remember the exact dose, just that I took them like Smarties.
The tablets made an instant difference, and probably saved my life.
Almost immediately, my appetite returned. I felt I had more energy and the aches and pains started to disappear. I was still struggling to walk but at least I wasn't getting worse, and over time this began to improve.
In September 1983, I went back to the clinic and saw Dr Hicklin, who explained that I had Dermatomyositis. The red tablets were Prednisolone, and I would be taking them for sometime, whilst my condition improved. 30 years later, I'm still taking them, and wouldn't be without them now.
I had regular visits to the clinic and regular blood tests, and as my condition improved the Prednisolone was reduced - first in quite large amounts and then in smaller, more precise amounts.
I left my job at the garden centre, and decided to return to school, where I could study for some more exams. It was a much easier place to start my recovery, than trying to hold down a job.
One of the obvious, and immediate, effects of taking Prednisolone, is that it makes your face swell up. Imagine as a 17 year old being in a school, with the signature "moon-face", and the names I used to get called.
My recovery took a long time, and wasn't without the odd set back. I still take the Prednisolone now, and although the Dermatomyositis is pretty will controlled, I have other conditions, some related to this first episode, others not.
