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Steph Hicks tells her story

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.


Posted by on September 25, 2013 in health, IBM, myositis, Reblog


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Invitation to submit information for posting or become an author on this blog


To post on this blog or become an author 


I   would like to invite anyone who has a story relating to myositis or disability to submit their their story or post for publication on this site or if you would like to contribute regularly I will “appoint” you as author and you will be able to post at your leisure.


Patients, Carers and Family that have been affected by this horrible disease.

Please feel free to submit articles for publication or become a regular contributor to this interactive site.

Let me know in the comments section below or email me


Posted by on September 20, 2013 in Disability, IBM


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Posting for Myositis Awareness Day

A vivid description of a day with Myositis

Posting for Myositis Awareness Day

So, what to wear today? Cant manage zips or buttons so were looking at elasticated waistbands – not too elasticated or weak hands cant pull them over fat hips. Difficult to avoid looking like my Aunt Ethel, but Pineapple make lovely dance trousers that dont look too bad and go on easily so thats what I live in. Leggings are an option if Im feeling particularly adventurous, but jogging bottoms make me look even more like Waynetta Slob than usual. Its 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 Im dressed and ready for a nap. Even the simplest tasks are completely exhausting and once youve used up your energy for the day you dont get any more. You have to weigh up everything you need to do in the day and ration your activity so that you dont burn out – do a bit, have a rest, do a bit more. Nothing can be done on the spur of the moment – its a bit like stretching your bank balance to the end of the month, only youre stretching your energy until the next sleep. And every day is the same. We dont get days off from this disease. I wish we did.

via Facebook.

via Facebook.

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Posted by on September 19, 2013 in Disability, health, IBM, Reblog


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A lesson in humility

A lesson in humility

angry man

When I woke up this morning I was angry.

Angry because the dogs woke me up when they barked sometime during the night.

Angry because I didn’t sleep all that well last night, due to the backache.

Angry because I couldn’t turn over without help when I wanted to.

Angry that my wife had to give me my daily bed bath

Angry that I couldn’t do it myself.

Angry that a hoist was brought to lift me from bed to chair

Angry that I couldn’t get out of bed by myself.

Angry that I could not put the toothpaste on my brush.

Angry that I had to be helped to go to the toilet.

Angry that I spilt some of my cornflakes down my shirt front.

Angry that I couldn’t clean up for myself

Angry that I had to sit in my wheelchair again today

Angry that I would have to amuse myself all day

Angry, angry, angry.

I switched on the TV in the lounge of my three bedroom house and waved goodbye to my wife as she drove her car on her way to work. Then I sat in my power driven wheelchair and watched parts of a documentary about ghettos, squatter camps, slums or whatever they are called in various parts of the world.

The ramshackle dwellings, held together by a few screws, lots of nails, some string and a large portion of prayer. “Houses” covered in plastic for waterproofing. No insulation against the cold or heat.

The lack of running water and no decent sanitation! The filth and general squalor of the places was and is disgusting to the educated and affluent.

Now I don’t think of myself as being affluent by any means but to the millions of people who live in abject poverty I am extremely rich.

To the people who live in these hell holes it is home and their way of life. They have no place else to go and some know no better. They sleep side by side for warmth and mostly on the hard floor. Walk for miles to get fresh water. Haven’t seen a proper bath in a lifetime and then go searching for work without eating anything. They have to walk for miles to get to the nearest bus stop or taxi rank if they can afford it, or they have to leave early enough to get to work in time. They then come home at the end of the day and have to deal with having to try to sleep with hunger pangs gnawing at their stomachs.

Then I thought of the elderly, the sick and the disabled. How would I fit into these poor little homes? My bed alone would take up most of the space. My hoist would be useless in the confined space and would have to be stored outside. Likewise with my power wheelchair which in any case would be useless due to lack of electricity to recharge the batteries. As a matter of fact all wheelchairs would be rendered useless due to lack of roads etc. If you’ve ever tried to push or pull a wheelchair across sand you will understand.   There would be no computer, phone or TV. I would have to sleep on the cold hard floor, sore back and all. I wouldn’t be able to seek medical help because I wouldn’t be able to get there in the first place and wouldn’t be able to pay for it in the second place. No medication for pain or anything else. How would I go to a non existent toilet because I would not fit into these porta-potties. It takes my hoist or two people to lift me.

And I thought I had problems. I thought I had the right to be angry when things are not going my way. I had the right to complain and to feel sorry for myself.

Instead of anger there should be gratitude for what comfort I have, for my darling caring wife, children and loving friends. My home, car and my wife’s job!

Yes in the eyes of many millions around the world I am affluent and I am sure that millions of healthy people would gladly trade places with me “disease and all”. For them, my life that I grumble and get angry about, would be preferable to theirs.

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Posted by on August 21, 2013 in Disability, health


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Daily prayer

Daily prayer


Dear Lord, I thank you for this day. I thank You for me being able to see and to hear this morning. I’m blessed because You are a forgiving God and an understanding God. You have done so much for me and You keep on blessing me. Forgive me this day for everything I have done, said or thought that was not pleasing to you. I ask now for Your forgiveness.

Please keep me safe from all danger and harm. Help me to start this day with a new attitude and plenty of gratitude. Let me make the best of each and every day to clear my mind so that I can hear from You.

Please broaden my mind that I can accept all things.

Let me not whine and whimper over things I have no control over. Let me continue to see sin through God’s eyes and acknowledge it as evil. And when I sin, let me repent, and confess with my mouth my wrongdoing, and receive the forgiveness of God.

And when this world closes in on me, let me remember Jesus’ example — to slip away and find a quiet place to pray. It’s the best response when I’m pushed beyond my limits. I know that when I can’t pray, You listen to my heart. Continue to use me to do Your will.

Continue to bless me that I may be a blessing to others. Keep me strong that I may help the weak. Keep me uplifted that I may have words of encouragement for others. I pray for those who are lost and can’t find their way. I pray for those who are misjudged and misunderstood. I pray for those who don’t know You intimately. I pray for those who will delete this without sharing it with others. I pray for those who don’t believe. But I thank you that I believe.

I believe that God changes people and God changes things. I pray for all my sisters and brothers. For each and every family member in their households. I pray for peace, love and joy in their homes that they are out of debt and all their needs are met.

I pray that every eye that reads this knows there is no problem, circumstance, or situation greater than God. Every battle is in Your hands for You to fight. I pray that these words be received into the hearts of every eye that sees them and every mouth that confesses them willingly..

This is my prayer.
In Jesus’ Name, Amen.


Posted by on July 31, 2013 in IBM


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Hand grip for weak hands

Great idea for helping those with weak hands


handle grips2

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Posted by on July 23, 2013 in Disability


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Dental & Doctor’s visits — What a pain

Dental & Doctor’s visits — What a pain

wheelchair dentist

Now being disabled and wheelchair bound brings its own challenges but my latest visit to my dentist and my doctor proved to be a work of transportation and maneuvering par excellence. Firstly let me explain that for the past year all transferring from wheelchair to toilet or bed has been carried out with the aid of a mobile hoist. As a result of my last fall I haven’t walked for a year or two.

Now, the doctor’s visit was the easiest as we arranged for him to carry out his investigation into my state of health at my home. So I was duly hoisted onto my bed for the inspection. Liquorice my paranoid, schizophrenic, antisocial dog took it upon herself to protect me against all comers and had to first be removed by covering her with a blanket, then rolling her up in it so that she could be carried away from the scene of the crime that this strange doctor was going to inflict on me.

Blood pressure, ears, nose and throat were all inspected and found to be in working order.  This was done with the doctor and my wife scrambling all over me and the bed to get access to the selected orifice.

Next, came the prostate inspection which made my eyes pop out on stalks and water profusely. I had never had this inspection done before and I was shocked into a near comatose state when I was numbed into sudden silent screams. You can ask any man about this inspection and I am sure that you will hear some horrific stories. Suffice to say that my doctor has a finger like a thick German sausage or Salami which was suddenly and unexpectedly inserted to do the feel test on the gland. Thus the eyes on stalks quip. Then to fill a little bottle for a urine sample —— a work of art when your arms and hands don’t work all that well. I’m not even used to weeing into hospital sized urine bottles, let alone something resembling an expensive perfume bottle.

Lastly a series of vials of blood were drawn after the nurse had searched for a vein in both of my arms and eventually resorted to draining a good portion of my life’s fluid from my hand.

A few days later I had to pay a visit to a dentist because one of my upper molars had worked itself loose and was causing considerable pain.

After spending hours on the internet fruitlessly searching for a dentist specializing in treatment of disabled patients I conceded defeat and selected a dentist from the yellow pages, whose receptionist assured my wife that they had plenty of experience with wheelchair bound patients. The dentist is on the third floor with only one elevator and a flight of steps for access. (I shudder to think what pain and suffering I would have had to endure if the lift had broken or if there was a power failure)

After negotiating narrow passages I got to the door of the surgery to find that there was a building supporting pillar or column situated right outside (opposite) the entrance door, thus cutting the passage in half. After much performance going back and forth I managed to get into the surgery. Then I faced “THE CHAIR”.

Access to the side of the chair was limited so it was decided that the dentist and his assistant would pick me up and physically transfer me to the dentist’s chair. No mean feat seeing that I weigh around 85kg. Puffing and grunting from all three of us interspersed with squeals of concern from my wife became the order of the day while they maneuvered in all directions to get me comfortable.

He looked, felt and decided to extract the tooth, between sucking in great gulps of air. His assistant was equally distraught and while he also inhaled deeply he sounded rather like an asthmatic vacuum cleaner. It sounded something like hoooooooop peep, hooooooooop peep. It was all rather hilarious but it is difficult to laugh with dental paraphernalia protruding from your mouth. So my hawr, hawr added to the hooooooop peep and the dentists gasps we probably sounded like some heavy metal band at practice.

Injections followed. If they had used laughing gas, they ran the risk of me going into hysterics. We waited for the prescribed waiting period, before yanking the offending tooth from my jaw. Fortunately by this time we had all started breathing normally.

Then the huffing and puffing performance was repeated in reverse. After much hooooping  and peeeeping I was dumped back into my wheelchair. I negotiated the problem doorway after another few back and forth movements, then into the lift, praying all the way down that the thing wouldn’t breakdown.

Needless to say that after all this carrying, pushing and pulling, my body was rather sore. I am sure that once the dentist and his assistant had recovered they would have given instructions to the receptionist to be fully booked if I should ever phone for an appointment again.

I have these episodes written indelibly on my memory and unless I develop Alzheimer‘s I will suffer in silence rather than undergo more embarrassment and physical abuse.


Posted by on July 18, 2013 in Disability, IBM


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