I May Be Disabled - But It Doesn't Define Me - Or Stop Me
For those who don't know, a 'Wheelie' is a wheelchair user.
I have Chronic Myofascial Pain Syndrome (CMPS) & Fibromyalgia. (But also often tested for other disorders, "just to be sure" - to quote one doc!)
It is so difficult to explain Fibro and CMPS (plus the complications that come with their combination), and people often regret asking, so on the advice of others who have these conditions, I have put this page on the blog to refer people to. It means I can freely give some advice and make comments about how these conditions affect me and also add the official info at the end. It's so much easier than having to keep explaining. Feel free not to read to the end of the official bits!
For those who have come to this page due to my work, because you are wanting to invite me, or myself and Steve to come and do some work for you – please don’t worry, these conditions have never stopped me doing my work – at all!
I'm not wanting sympathy (I hate sympathy!) or to be the centre of attention - but I hope this info will also help people to understand others who have the same conditions.
But firstly – my own comments:
I was born with these conditions, but not diagnosed until I was 19. For those who have known me for a while and think I’ve always got something wrong with me…..It is ALWAYS due to the CMPS or Fibro. (Comments made to me along the lines of “you’re always ill” or “are you still ill” have caused a lot of distress in the past) A few years ago I had chemical allergies – and yes, they were due to the fibro. I have never had anything wrong with me that isn’t connected to the fibro or the CMPS! But I am very thankful that I no longer have the chemical allergy problem - just a problem with air fresheners and perfume that makes my voice hoarse!
Hard work doesn’t make things worse. If I’m told it might be best if I didn’t do something because of my health, it makes me a little cross. If you will excuse my language, I tend to have a rather bloody minded approach to these conditions and I don’t give in to them!
I use a wheelchair, and have two that are interchangeable depending on the situation or transport I need to access. I will use a crutch/walking stick if where I'm going doesn't have level access so my smaller lightweight power-chair can be folded and taken up a couple of steps by colleagues, but walking will be very minimal.... This allows me to access more venues. Therefore - I can attend more meetings than I would otherwise!
Because of other associated disorders that go with these conditions, I have a lot of problems with my eyes, 'acquired nystagmus' being the main problem but also permanent eye pain, double vision and blurring fog. This makes reading painful. I can often see what’s on the page, but it moves around a lot, has a shadowed blur to it, and to look closely and read really hurts. Focusing in one place, especially when there is bright light involved (ie: projection screens at church) is difficult too. Seeing in crowded situations is harder as my eyes don't know where to look and give up! The floor often looks like rippling shallow water. Tiredness and illness makes it worse. (Sadly - there is little info or advice out there about this)
If you need to send me paperwork, please send it either by email as an attachment, so my computer can read it to me, or on creme/light yellow paper in a sans serif font sized at a minimum of 16pt (Preferred 18/20pt).
Some days will be moderately OK on pain and wobbles (for a fibro sufferer!) – some days will be very bad. Sometimes there is no reason for the bad days – they just happen! I can have two weeks rest and be really ill at the end, but then do three weeks work at Spring Harvest and be Ok!
However, the things that can affect symptoms are:
· Sitting still for too long
· Walking too far (anything up to 10 metres can ratchet pain from a 5/10 to a 12/10 and I get slower and more wobbly as I go - hence my hubby often calls me lurch!!)
· Repetitive movements
· Infections, being too hot, being too cold
· Fatigue (But with fatigue and poor sleep being symptoms too – this can be self perpetuating!)
· Extreme stress (And I mean extreme – not normal everyday stress)
Most days I will look very well – everyone with CMPS/fibro can look well, but underneath, it still hurts. I smile a lot and look happy….which I generally am, but it doesn’t mean I’m not in pain. Any muscle in the body can be hurting in any combination or level of severity at any time of the day or night. Some days will be a 5 or 6 out of ten, a lot will be higher. I haven't dropped below a 5 in many years.
One of the symptoms is “Fibro fog” (See below). This affects me like dyslexia. I need information – especially numbers given slowly (If you’ve ever heard my mobile answerphone message – now you know why!!) I may forget your name or use one of your relatives names instead, use the wrong words or mispronounce them whilst speaking to you. (Amazingly, I rarely do this when working….God’s grace or what!) Please ignore/translate in your head or just laugh at me – please don’t patronise me by suggesting the right word!
Stage 4 Chronic Myofascial Pain Syndrome can also give voice problems, so you may hear my voice change by the end of a long day(!)
Well meaning people often suggest different treatments and “miracle” cures – and believe me I’ve heard it all before! Please don’t suggest them – researching and trying different things actually uses way too much energy. I have an RSS feed on the web pages and blogs giving the latest sensible research on treatments.
The wife of your friend's cousin (twice removed) may have these conditions too, and be able to do all sorts of things.... well good for her, but please remember that everyone is affected differently depending on many factors - both these conditions are a spectrum of symptoms and severities. Please don't compare me to others.
Please don’t tell me God wants to heal me either – lots of people have done that and after a while it becomes painful and draining. (Especially when people try to lay hands on me!) I am content with who I am and, even with these conditions believe that I am God’s beautiful creation. I work daily with God’s grace and power – if and when He wants to heal me, God will tell me Himself! (In fact he’s far more likely to tell me than you!)
Advice for my Friends:
Hugs are fine….just ask first (Just in case it’s a really bad day) and hug gently
If you’re not into hugs….shake my hand gently - don't squeeze!
Feel free to ask how I am, but I can’t guarantee I’ll give you a sensible answer!
Please don’t fuss or over do the sympathy.
My closest friends and supporters use a scale of one to ten to allow me to give a one word answer to how I am – if you really want to know how I am, feel free to ask where I am on the pain scale (One = good, ten = bad). This is also the secret code I use on social media for friends who are in the know: The post will read as a figure out of 10 (5/10) followed by where the pain is. If I put 12/10 it means the pain meds are not working. If I don't put where the pain is it means the pain is all over. There - now you know how to pray for me with very little effort from me :)
Those of you familiar with these conditions will know “The Spoon Theory”. To many, this sounds a bit daft, so let me give you my version of the spoon theory using money….
Think of the energy needed to live each day as money. On a good day, I might have £10 worth of energy to ‘spend’. On a bad day, that can be reduced to £5
On a good day, getting ready in a morning will cost me £3 but on a bad day, it can cost me £6. Shopping will cost me anything between £3 and £6 depending on whether I 'lurch' slowly around a small shop or use my wheelchair. Cleaning and Ironing (If I did it - I now have some one come in to help with cleaning and ironing) would cost almost the full quota. When I’m working on missions, camps and church weekends etc I can balance how much I spend at various points of the day and balance pain medication to be at their optimum capacity at the time I am active in my parts of the programme. This is why I can successfully do missions and church weekends etc. So…. if I’m working with you on a camp or houseparty and I don’t offer to help with the washing up, it’s because I’m saving up my energy money and trying to ‘spend’ it wisely…. not because I’m lazy :)
My eyes have their own version of this theory - they generally have £5 a day. By the time I've finished doing this latest edit of the blog, I will have used £4.
Now to the 'official' info on these conditions:
Myofascial Pain Syndrome (MPS): This is a painful musculoskeletal condition, a common cause of musculoskeletal pain. MPS is characterized by the development of Myofascial trigger points (TrPs) that are locally tender when active, and refer pain through specific patterns to other areas of the body. A trigger point or sensitive, painful area in the muscle or the junction of the muscle and fascia (hence, myofascial pain) develops due to any number of causes. Trigger points are usually associated with a taut band, a ropey thickening of the muscle tissue. Typically a trigger point, when pressed upon, will cause the pain to be felt elsewhere. This is what is considered “referred pain”.
The fascia is a tough connective tissue which spreads throughout the body in a three dimensional web from head to foot without interruption. The fascia surrounds every muscle, bone, nerve, blood vessel and organ of the body, all the way down to the cellular level. Therefore, malfunction of the fascial system due to trauma, posture, or inflammation can create a binding down of the fascia, resulting in abnormal pressure on nerves, muscles, bones or organs.
This can create pain or malfunction throughout the body, sometimes with bizarre side effects and seemingly unrelated symptoms. It is thought that an extremely high percentage of people suffering with pain and/or lack of motion may be having myofascial problems; but most go undiagnosed, as the importance of fascia is just now being recognized.
New research now considers CMFS to have four stages, stage one is similar to what a lot of people get post injury, but with the right physio can recover. I am stage four - the point of no return.
The following is from the Fibromyalgia web page:
What is Fibromyalgia?
The primary symptoms of fibromyalgia include widespread musculoskeletal pain, severe fatigue, and disturbed sleep. Fibromyalgia means pain in the muscles, ligaments, and tendons – the soft fibrous tissues in the body.
Most patients with fibromyalgia say that they ache all over. Their muscles may feel like they were pulled or overworked. Sometimes fibromyalgia symptoms include muscle twitches and burning sensations. It can also give you the buzzing feeling of a constant electric current running through your body.
To relate to the fibromyalgia symptoms, think back to the last time you had a bad flu. Every muscle in your body shouted out in pain. In addition, you felt devoid of energy as though someone had unplugged your power supply. While the severity of symptoms fluctuates from person to person, fibromyalgia is a little like this
Common symptoms of fibromyalgia – (I have all of these symptoms in varying combinations and degrees!)
· Pain - The pain of fibromyalgia has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, buzzing and stabbing. Intense burning may also be present. Quite often, the pain and stiffness are worse in the morning and may hurt more in muscle groups that are used repetitively.
· Fatigue - This symptom can be mild in some fibromyalgia patients and yet incapacitating in others. The fatigue has been described as “brain fatigue” in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as though their arms and legs are tied to concrete blocks, and they have difficulty concentrating, e.g., brain fog.
· Sleep disorder - Most fibromyalgia patients have an associated sleep disorder called the alpha-EEG anomaly. Sufferers appear to spend the night with one foot in sleep and the other one out of it, waking up feeling as though they’ve just been run over by a truck.
· Chronic headaches - Recurrent migraine or tension-type headaches are seen in about 70% of fibromyalgia patients and can pose a major problem in coping for this patient group.
· Temporomandibular Joint Dysfunction Syndrome - This syndrome, sometimes referred to as TMJ or TMD, causes tremendous jaw-related face and head pain in one-quarter of fibromyalgia patients.
· Other common symptoms – eye pain and visual disturbances, chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, nausea, dizziness, and impaired coordination can occur. Fibromyalgia patients are often sensitive to odours, loud noises and bright lights and chemically sensitive. (Plus various other bits and pieces!)
NOTE: Classifications of Fibromyalgia change according to country and consultant. In America there is a much greater and more realistic understanding and most specialists classify it as a Neuro-muscular disorder, often hereditary. Sadly most specialists in the uk are still in the dark ages when it comes to this condition – the only ones willing to listen to American research are those who have the condition themselves.
For on going care:
In my geographical area, chronic conditions don't qualify for physio - If I want it, I have to pay for it. The same goes for the splints I need for my wrists - an OT recommended them, but I had to buy them myself, as there is no budget for those with on going conditions. Knitting is my physio - it keeps my hands moving, but it still hurts.
Aside from an understanding GP, I'm largely left to just get on with it!