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.
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.
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.
Hey Dave, What a Great Post! Really explains so much! Thank you for posting!
ReplyDeleteKind regards Ron