September 21st is Myositis Awareness Day.
To do my bit towards raising awareness, I am posting a series of mini blogs over the next few days to give a bit of insight into what it means to live with myositis. I’m not moaning or complaining, or even looking for sympathy. I’m just explaining what the disease is and what impact it has on my life. There are many others whose struggles are much harder than mine, but I can only say how it is for me. What I’m describing is a normal day. Some are better, some are worse.
7.15am Wake up facing middle of bed, head has slipped off pillows during the night. Need to turn to other side to switch off alarm. Can’t move. Spend several minutes shuffling hips so that I’m on my back. Now need to lift head onto pillow to complete the turn. Heads are heavy, it’s not happening. Starting to panic. Laying on good arm so can’t push pillow out of bed. Finally summon up strength to roll head onto pillow, then the roll onto left side is relatively easy but we’re not finished yet. Push legs out of bed for leverage and push into sitting position on edge of bed. Alarm now shrieking so turn it off. Need the loo, try to stand up but so exhausted from turning over legs won’t do it. Pile pillows up properly, put head on pillows. Swing one leg into bed – easy. Other leg? Dead weight, takes ages. I’m freezing cold and still need the loo. Happy Tuesday everyone.
Another day waking up feeling drained, like I’ve done a 10 mile run in my sleep. After the trauma of getting my aching body moving (described yesterday) I manage to get out of bed and head to the bathroom. You have to time it just right, myositis muscles can be a bit unpredictable. Too soon and nothing will happen, too late and – well never mind. Anyway, having progressed through all the toilet seat risers, even the highest one is no good to me now. Occupational therapist recommended a powered toilet riser at the beginning of this year but social services are still haggling with the council over who’s going to pay for it. So I have to manage without sitting down. Great fun with a broken leg! Then into the shower, wash my hair one handed, hanging on with the other so as not to fall. Towels are heavy, so hard to get dry. Leave hair to drip until sitting safely on the bed again and can towel dry. Hair drier is also incredibly heavy, the whole procedure is exhausting and I’ve still got to get dressed. That’s the next story…
So, what to wear today? Can’t manage zips or buttons so we’re looking at elasticated waistbands – not too elasticated or weak hands can’t pull them over fat hips. Difficult to avoid looking like my Aunt Ethel, but Pineapple make lovely dance trousers that don’t look too bad and go on easily so that’s what I live in. Leggings are an option if I’m feeling particularly adventurous, but jogging bottoms make me look even more like Waynetta Slob than usual. It’s too much effort to raise arms above shoulder level so t shirts, jumpers etc have to be big and baggy or at least have lots of stretch. Shoes can only be flat (but not too flat) no laces or buckles, and very light weight or they feel like lead weights on my feet. Coats, on rare going-out days, are definitely a 2-man job. Anyway, after a lot of puffing and a few bad words I’m dressed and ready for a nap. Even the simplest tasks are completely exhausting and once you’ve used up your energy for the day you don’t get any more. You have to weigh up everything you need to do in the day and ration your activity so that you don’t burn out – do a bit, have a rest, do a bit more. Nothing can be done on the spur of the moment – it’s a bit like stretching your bank balance to the end of the month, only you’re stretching your energy until the next sleep. And every day is the same. We don’t get days off from this disease. I wish we did.
At last – showered, dressed and ready for the day. I gather up some washing and put it in a canvas shoulder bag to carry down stairs. Collect up phone, iPad, coffee cup and sit on stairlift. Oops, forgotten panic alarm pendant. Put everything down, heave self off stairlift and fetch pendant. Back to stairlift and load up again. Downstairs, take washing to kitchen and load washing machine, drop 2 socks and a pair of pants on the floor. Fetch picky-up thing from by front door to retrieve items from floor, spend 10 minutes squeezing Bold 2in1 out of stupid bottle. Half fill kettle (full kettle too heavy to lift) and feed cat and dog. Cat is easy, she has her food on a work surface so dog can’t steal it. Put dog’s breakfast in her dish, put dish in long-handled dustpan and lower to the floor. Clever eh? Make coffee and carry to my electric riser chair in front room. Go to porch to check for post. 3 letters on the mat. Fetch picky-up thing from by washing machine and poke letters around the porch until it becomes apparent that they will have to stay where they are until Colin gets home. Back to kitchen, get bowl of granola for breakfast and take to my chair. Check laptop, phone, iPad, work paraphernalia and crutches all to hand before sitting down. Still working from home while broken leg mends, so that’s me settled for the morning. I’ll work till lunchtime, then this afternoon I’m going on an adventure
My afternoon adventure was a trip to the John Radcliffe hospital to see my consultant. The only thing I really wanted to talk to him about was the new drug trial that we’ve heard so much about, and it looks as if it really is going to happen. The big noises are meeting at the end of next week to sort out the details, they don’t know yet what the criteria will be or how many centres will be involved, and they don’t know exactly when it will start. They seemed confident though that it will go ahead, and that’s great news for all IBMers, even if we don’t all get on the trial. At least something is happening after all these years of nothing, and if the drug is proved to work we’ll all get it in the end.
An adventure in the afternoon isn’t really a good thing. Myositis makes you horribly tired, and by mid afternoon I can hardly keep my eyes open. So an afternoon nap is part of the daily routine and if I time it right I can wake up with enough energy to get through the evening. As long as I don’t try to do anything strenuous of course, like cook dinner or eat it or, heaven forbid, GO OUT!! Anyway, no nap today so when we get back from the hospital I potter about doing a few chores, staggering and dropping things until Colin gets cross and orders me to sit down. How did I become this person? My real self is always busy, loves line dancing, walks the dog, bakes bread, cleans the house, runs upstairs, goes to the gym (admittedly mostly to sit in the jacuzzi), visits friends, goes shopping…… Where did I go? Well, I like to think I’m still here, buried under a layer of myositis that I will escape from one day, like a snake shedding its old skin. The new drug trials are a glimmer of light at the end of a very long tunnel but there’s not going to be a miracle cure, not yet, just a chance that the disease process might slow down, might stop, might even be reversed a bit. You have to have hope, or you’ve got nothing. So I head off to bed on my stairlift, the dog races ahead to stake her claim on half the bed (the middle half). It’s best not to disturb her once she’s settled, or you get a hind paw jabbed in your ticklish spot just as you’re falling asleep. In the morning it will all start again, just the same as today feeling exhausted, achey and weak but with the added bonus of sore muscles from today’s adventure. And if you see me tomorrow you’ll think how well I look, and you might even ask me if I’m feeling better. And I might smile and say thank you, I’m fine. Or I might poke you in the eye, you can’t rely on my good nature to that extent.