Your Stories - Paul in Southampton, UK

In two weeks a milestone will have been achieved. On 2nd July it will not only be my 43rd Birthday but also the 1 year anniversary of the last day I was able to work. It is something I'm not proud of at all and to be honest I had no idea it would have affected me this much.

I started to become unwell in January 2014. It started with a headache which progressively got worse and never went away. The headache affected my vision and I had an adverse reaction to bright lights. Then I noticed my knees were painful. Again the pain increased much like the headaches.

After several attempts to get help from my GP who was dismissive I sought a 2nd opinion and saw a different GP, who after the initial examination introduced me to the world of Fibromyalgia. It was only because of her belief in me and the symptoms tests were done to exclude other health issues and eventually I saw a Rheumatologist who diagnosed ME in August 2014.

Luckily for me the GP had started treating me for ME or Fibromyalgia on the first day I saw her. Various medications were tried, tested and rejected because of adverse side effects.

While this was all going on I was still working full time. I had 3 weeks off in May as the pain was just too much. From that point on, work became a place of disharmony. My Directors and Store Manager made life very difficult, even to the point where they suggested I resign and re-apply for a part time job!!!

Before being ill my career was progressing very well and I had the full backing and support of my Directors and Store Manager in evolving my career into a Regional Training Manager. Sadly that support stopped the day I returned to work after having 3 weeks off sick.

Dealing with a massive change in life is hard enough, to have no support from your employer and in fact for them to make life even harder was really tough to handle. Life became a battle, not only to get the best help I could while dealing with a horrible illness, but also to stand up for my employment rights against a Global company who refused any help from HR and who rejected any form of communication was devastating. Despite many attempts from me to try and find common ground their only answer and direction they wanted to go in was the end of my employment with them.

It still plays on my mind from time to time and this 1st year anniversary has stirred it up again.

In November 2014 I started stuttering and losing my words, by mid January it was all I could do to string a few words together. My GP and consultant were both concerned and started talking about a stroke!!! I was horrified, I didn’t feel like I had a stroke, but what would that feel like?

In March 2015 after playing around with the medication and all the ups and downs that go along with it my GP and Consultant eventually decided to stop the Gaberpentine. I was reluctant as I had been on it since May 2014 and it was the only medication I felt provided benefit. By this time I would have been on Gaberpentine for almost a year. I started to reduce it day by day and once I was clear of it my speech returned very quickly.

I had been on a concoction of over 30 tablets a day plus a 52.5mcg per hour morphine patch and nothing was helping.

After the success of coming off the Gaberpentine and not only my speech returning, but also my concentration and memory improved. I, with the consent of my GP, reduced all my other medication and stopped most of it all together. It was so liberating. YES, the pain increased, but I was me again. I started to laugh and smile. As the effects of the pain killers left me I became more and more like my old self. Clarity was returning to my life. With the help of my GP and consultant I was only on paracetamol and a Morphine patch. I had stopped all the sleeping tablets and started to sleep when my body told me to, this was against the instructions of my GP, but I made a conscientious decision to listen to my body.

My sleep pattern is all over the place. I have a few hours sleep from 11pm onwards and then up again approximately 2am until 6 or 7am and then sleep again for a few more hours until about 10am. It works for me and I feel so much happier for it.

In late May2015 I made myself a promise that I would never return to the zombie who was moody, unresponsive almost synthetic as the tablets and medications robbed me of any sense of real human emotions and feelings. I choose increased pain and to be me, a fuller person.

I embraced parts of my life I had ignored for many years. I am a creative person, right to the core of who I am. I had ignored that part of my life while trying to conform to the corporate needs of the employers I worked for. Many times in my professional life I was told I was a square peg in a round hole. No longer would that be the case.

While I am deeply upset and a little angry I have lost my job because of this horrible illness, and yes this 1 year anniversary of my last working day is upsetting, I have to remember what this illness has done for me. Not only am I creative I am also inherently optimistic, so with that in mind I now use my creativity as a form of therapy.

Every day is a day for creativity, be it writing, sketching, drawing, painting, crafting, stitching or doodling. This illness has afforded me the opportunity to embrace a part of my life, a part of who I am and run with it. I have submerged myself into being as creative as the illness allows. It is wonderful to reconnect to something I had ignored for so long. I wonder if by ignoring something so strong within me was not part of the cause of the illness in the first place. Should I have been climbing the corporate ladder in the first place?

The journey over the last 19 months has been fraught, emotionally draining and dam right depressing, but and it is a big BUT, I have got through it and over the last couple of months started to build a new chapter of my life accepting the limitations of the M.E and Fibromyalgia while still trying to forge ahead in a far more creative, soul enhancing way.

From a very young age I was always fiercely independent. Not being able to work and subsequently losing my job was deeply upsetting as my independence had been taken away. Thankfully I have a remarkable partner who has stood by me through this and who has had to endure the very dark places I went to when on all the medications.

I am lucky they have had the strength of character to visit those places and journey with me. It is only now, now I feel my mojo is returning and with everything I create another brick is being laid in the foundation of a better future. That better future encompasses everything I possibly should have been in the past and because of that we can start to plan our future together and get back on track.

Writing this has been so cathartic. I was so angry when I started writing it, but now I feel uplifted and thankful that I now have a freedom to explore a whole new future which includes the pain and fatigue of a horrible illness, but an illness that no longer defines me. I feel I am starting to reach a place of harmony with it. Yes I still have bad days where I can hardly get out of bed, but those days are wonderful for letting my imagination explore new thoughts and ideas for projects. I hope the future brings compromise between the health issues on my ongoing creativity.

Have my fellow sufferers been suppressing something in their lives that really should be acknowledged? I believe part of my illness is due to the continual dampening down of an inner me who was always trying to express themselves. It would be interesting to know how many make that same connection. 

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