Thank your taking time to read my story.

I intend to complete 4 sporting challenges in a bid to raise peoples awareness of a rare muscle disease called Myositis, that has affected us as a family. My wife Joanne was diagnosed with Polymyositis earlier this year after a long period of illness and suffering. With two young children this has had an impact not only on Joanne but our family and friends who have been our support network. 

I am going to complete the following events

Great North Swim, 2 miles - 14th June 2015

Manchester to Blackpool Bike Ride, 60miles 12th July 2015

Warwickshire Triathlon, 200m Swim, 23km cycle 2,5km Run.

Aviva Tour of Worcestershire, 77mile bike ride taking in routes and climbs the professionals do in the Tour of Britain. 4th October

Prior to Joanne being diagnosed, I like many of you had never heard of this rare disease that affects about 1 in 10,000 people. Myositis causes inflammation of the muscles resulting in pain and weakness of the muscles. When muscles are used they produce CK (creatine kinase)the normal person has levels between 60-174, it would be expected an athlete after completing and Ironman event (2.4mile swim, 112mile bike followed by a marathon run all in 17 hours) to have levels of 1500, Joanne was diagnosed with levels of 5800. This meant the pain she felt was similar to completing nearly 4 ironman events just from completing day to day tasks and chores. There have been many lows and stresses over the past year we as a family have had to deal with just to try to have a 'normal' life. The road to recovery is a long path but we like many others are coming to terms with living with Myositis. 

www.myositis.org.uk 

Here is Joanne's story to explain how she felt and still feels dealing with Myositis:-

Joanne's Story

August/September 2013 I decided I needed a challenge, I saw advertised the Bath Half Marathon and impulsively booked it.  After having a baby in April 2013 I knew I had to rebuild my fitness ready to take my fitness test for work after maternity leave the following January (2014) what a great way to gain motivation right?

I started my training the next day using the NHS Couch to 5 k podcasts, initially I started well and found I could skip through a few weeks, but as time went on I found I wasn't actually getting any further or any better. Once I returned to work I started asking 'the runners' how they progressed, as I felt I wasn't improving.  Many people gave advice and offered to run with me but I was that embarrassed of my progress or rather lack of it I always had an excuse to hand.

I started to complain of my legs being numb in the mornings, being unable to kneel properly on the floor with my children, and getting up off the floor, I was physically and mentally drained even walking up to bed was an effort, but I put a lot of it down to the stress of starting back at work, and dealing with a 3 year old and baby at home too.  It wasn't until my work fitness test I knew something was seriously wrong.  For the fitness test I had to do a grip test, this was repeated several times as I could not grip the hand held device properly, even the fitness examiner looked at me funny at this point and said we will come back to that later, this for me started to raise alarm bells as the grip test is not a difficult test, one I'd never struggled with before.  Next was the bleep test, running backwards and forwards I started to struggle fairly quickly, not breathing wise like usual but my legs were burning and were going like jelly, I had to stop at level 3 which is no where near the level required for my job.  How could this be? How could I have been training for half a marathon and now can't even get pass level 3 on a fitness test? I started putting things together and knew I had to seek medical help so the following day I had arranged to see a doctor. 

Speaking to my doctor he asked several questions and I realised how limited my life had become, things had happened so gradually I hadn't noticed all the changes.  He originally believed I could have had Fibromyalgia and sent me to have blood tests for this, I had the blood tests on the Monday late afternoon and by Tuesday morning I had been contacted at work to go for an urgent appointment at the doctors that day.  I was signed off from work there and then, no discussions, and was informed I had a rare disease called Polymyositis.  My doctor wrote this down on a piece of paper as I'd never heard of it before and said be careful what you read on the internet, I'll get you in with a consultant as soon as possible but you need to start on these high dose steroids do not get pregnant.  The following week the appointment with the consultant was through, again this seemed as much as a whirlwind as my doctors appointment, I heard CT Scan, Muscle Biopsy, Cancer, Cancer treatment, Muscle Weakness, remission?, CK Levels too high, DO NOT Exercise, all these things going round in my head all with the baffled look from the medical professionals wondering why I had this and how it started, no one knew, but it was quite clear from the start my doctor and consultant would both do everything they could do to help me.

It was at this point things started to get even worse, I couldn't walk the stairs properly (living in a three storey house is not ideal at this time), I could not lift my babies, or do simple chores, Stuart would come home from work to a line of baby bottles on the side as I could not even unscrew the tops to wash them, even getting dressed in the morning was an effort, when did fastening a bra or even having a shower become so difficult???  I started to rely more and more on my parents, mother in law and friend Dawn when Stuart was working as I was too scared to be alone in the house with my children, I could no longer lift Jack, and was scared to death of him crawling towards danger and not being able to get to him quick enough as getting off a chair was becoming more and more of an issue, playing with my 3 year old had even become a chore.  I was getting scared, how was I going to live a life like this, who was going to bring up my children when Stuart was working? Will I ever be able to return to work?  The threats of medical retirement were already coming in thick and fast from work, as if I didn't have enough stress in my life right now.

I received a muscle biopsy, I was privileged (or not so) depending on your viewpoint to have been awake during the surgery and watching the whole procedure, the surgeon talked me through it all whilst someone from Birmingham Labs were stood outside the door awaiting my muscle to take straight away to be examined, this reconfirmed all suspicions that I did in fact have Polymyositis, not only this but it appears to be a rare strand of the rare disease (typical).  I had a CT scan which luckily showed my major organs were not yet affected which was a relief after all these are muscles too.  I am still awaiting a Mammogram which is currently being refused due to my age even though this is a recognised test due to the high risk of cancer with Myositis (Again another fight).

I am currently on a treatment which is commonly used for cancer to help fight this disease and I'm on high dose steroids to reduce the inflammation in the muscles which the doctors are gradually trying to reduce to see if the base treatment is actually working to fight the disease.  At present it seems to be working and a lot of my life has become 'manageable' again, but we will only be able to see properly once I'm off the steroids completely how my life will be affected long term.  

There is at present no cure for Myositis, the best I can hope for is remission, I have joined a Facebook group for patients of Myositis, since being diagnosed in March/April 2014 in this time I have seen from this group adults and children die from this horrible disease, I have in a way been very lucky as although my symptoms have been horrific and life changing to me they, have disappeared into insignificance when reading what others are suffering in the hands of Myositis, many unable to walk or live alone as they are unable to do anything for themselves, I now know why my doctor advised right at the start be careful what you read.

A cure needs to be found for myositis please, please dig deep, and help us in our fight against Myositis.