Hello everyone, I’ve been meaning to do this for a while now but since I’ve been asked by Men with Fibromyalgia if I’d like to write my story having Multiple Chronic Illness’s, I thought I’d just get on with it. So here goes….
I’m Paul, a 40 year old fibromite from the UK. I honestly don’t know where to start but I guess the beginning is probably the best place to start. I’ll apologize in advance as I can tend to ramble, get sidetracked and forget that I’ve even started this ????.
This may be longer than I intended it to be but trust me it would have been way longer as I will have wrote , deleted and re wrote things several times and Removed several paragraphs of unnecessary content and proof read to death!
I can pinpoint when this illness took hold of me and pulled me under and at the time that’s exactly how I felt, but six years on I feel I’ve got a hold of the fibromyalgia and all its friends that follow it around like an evil entourage!
On the 10th of February in 2010 I had gone to work as usual. I was an electrician and had gone to work at a farm. I had worked at the farmhouse many times but this was the first time I had been to the processing part on the site. I went to see the site foreman to ask where the job I’d gone to do was. I followed his instructions and just as he’d said, I turned the corner and there was the offending spotlight about 40 Meters in front of me. I proceeded on the flooded concrete floor towards the light.
I looked like I was walking on water!!
All of a sudden the floor disappeared and I fell into an unmarked, uncovered pit. My back, neck and head hit the sides as I slipped into the 8ft deep hole. It was smelly and freezing cold. I eventually managed to get my bearings and climbed out. I lost the tools and heavy cable I was carrying as I fell. That trauma brought on fibromyalgia and a whole range of accompanying ailments. But I wasn’t to find this out for another two years.
To cut a really long story short I continued to work for another three years gradually being in more pain, seemingly day by day. During this time paracetamol and ibuprofen just didn’t cut it and I went on the journey of trying all the different medications known to man( and woman)
The last year of work was the worst for me. The company I’d worked for for over 20 years wasn’t , let’s say, helpful? I was signed off work by the doctor with chronic pain, chronic fatigue and depression. After a long time I was dismissed due to ill health. It wasn’t my fault I was like I was. They had a duty of care, and, well. They just didn’t. I got what I was entitled to and I felt somewhat better towards ‘the system ‘
Three years on from leaving work. And still not able to work. I have support from friends and family and I take each day as it comes. I’ve been through some really tough times and I’m not seeking sympathy, I just have, as have most of you reading this. I’ve suffered with depression and it’s still there but not as bad as it was. I had really bad anxiety but that’s much improved but again it’s not totally gone away. I think here might be a good time to list the major illnesses, symptoms, afflictions and current medication.
I have fibromyalgia, chronic pain, fatigue, Depression, Anxiety, Ankylosing spondylitis, Several prolapsed discs, Trapped nerves, Sciatic pain, pins and needles, Reynards phenomenon, Restless leg syndrome and a form of nocturnal epilepsy episodes.
I currently take: oramorph (as and when needed) tramadol, zomorph, duloxetine, naproxen, nortriptyline, paracetamol and lansoprazole. There are times I feel like they’re not working and then I might forget a dose, or two, and that’s when I know they do work! It’s obvious we build up our tolerance to the pain and I often feel if someone else suddenly felt my pain they’d be on the floor writhing in agony and yelling for an ambulance lol.
I’ve been to my GP and pain clinics, seen a health psychologist and have group pain management sessions and a 1-2-1 with the health and well being adviser. I’ve had all the trigger point injections and nerve blocks going. Phenytoin infusions too. But nothing seemed to help so I’m just left with pain management via all the medications above.
Like most of us fibromites I have good and bad days. I try to do the best I can to keep the bad days to a minimum using different ways I’ve have learned to manage this condition. So I don’t exercise as such. Meaning I don’t go to the gym mainly because I would end up pushing myself too far and secondly I can’t really afford a membership ????????. But I do stretches and keep active by means of short walks and light household chores. I try not to just lay on the bed or sofa unless I’m resting.
Having a positive outlook helps more than you realize. i.e if you wake up and imagine your going to feel crap today then chances are you will feel crap. I’m not saying you can think pain away but I am saying you can think it worse. This seems like a good place to talk about C.B.T. For those that haven’t heard of it ( I hadn’t before all this pain entered my life, and when I googled it I hadn’t realized I was searching images and I got more than I bargained for!!!)
Turns out it’s not just short for cognitive behavior therapy????????????????!!! I’m so pleased that I didn’t ask my then 13 year old son to google it as I almost did!
I’ve learned not to be judgemental since I’ve had fibromyalgia and depression etc. Not that I was before. It just means more to me now. Nobody is weird or odd they’re just different. I have no right to judge as I may not know that person or their story. Anyway I digress…
So CBT, does it work for me? I have to say my first comment was “my pain is constant and debilitating and real and not in my head”. I say you can’t break your leg and and by power of thought you can’t mend or take the pain away much like with fibromyalgia. I do get that negative thoughts can make things worse and that using this technique can help alleviate problems, but only if you want it to or believe in it.
I personally think its not the best. It can work for some but not others. What I’ve taken from it is not to be negative. If you keep your mind busy then it has less time to think about pain all the time. It takes nothing away but you don’t realise it so much. Whether you read a book, colour one in or listen to soothing music and imagine your on a white beach with the waves lapping at your feet, do whatever makes you happy the more you like it the more your mind will wander.
I think the hardest part of all this was admitting to myself that I’m not the same person ( physically or mentally) as I was. It probably isn’t the hardest thing in relation to all the ways my life’s changed but to me, at the time, it was. I lost my job, my mind, my ex wife and the great relationship I had with my son. The barrage of meds and constantly changing too to try to find the right one led me to become someone else. It’s no excuse but it’s a valid reason. We had money worries and I’d left work and I had way too much time on my hands. I wasn’t in a good place and a had a breakdown. Barely sleeping (one time for 5 days straight). The drugs caused me to become reclusive, even from my own family. And because I didn’t want my son or then wife to see me in pain I was separating myself more from life.
It’s some time in the middle of all this( like I didn’t have enough going on) that ‘old thoughts and feelings ‘ Came to the forefront of my mind and took over and I did something totally out of character and got caught. Needless to say it broke the marriage up.
I obviously can’t blame the pain and meds for ‘changing’ my sexuality as clearly that’s not how it works. They did however cause me to lose my mind which led me to cheat on her for the first time ever in our 20 year relationship!
Finally to wrap things up so to speak, my drug regime is now settled and I don’t feel like I’m floating all the time. Take your meds as prescribed don’t be tempted to take Tramadol for instance only at full dose when the pain is bad. This will make the side effects worse and you could have them all the time.
These medications need to be taken all the time so it’s in your body and working properly and side effects generally become reduced or non existent. I have a great, supportive and caring partner, he helps me so much. I honestly don’t know what I’d do without him.
I am also part of a local fibro group. It’s for anyone with any invisible illness and chronic pain etc. We meet up every Friday as long as we’re able to make it of course. We’re all in a similar boat so if for whatever reason you can’t make it nobody minds and nobody feels let down. It’s held at a local pub, starts at 10 am. We have breakfast and general chitter chatter. It’s not structured but we do talk about our illnesses but it’s mainly a great time to catch up, share information and hints and tips. Ive made some really great friends and it got me out of the house. This group has made massive differences to so many people including myself. I would urge anyone to locate and take part in a local group.
My mental health is in a much better state. I can still have the odd wobble but it’s never been as bad lately as it was 2-3 years ago. All I’d like now is my son back in my life more than the odd text. He’s 17 now and I know parents of teenagers never always get the response we’d like. He’s the same with his mum. That said when you write a lengthy message asking several questions and ask how they are and what they’re up to. Letting them know how much you love them and how you’d love to have more of a relationship but that You understand it’s not gonna be easy but it’s what you want and you’re ready when they are. And all you get in response is” KK”. A little disheartening but I know it’s not personal.
Ok folks well I think that’s it. Thanks for taking the time to read this and for getting to the end of this story. I hope it helps other men to see that it’s not just a woman’s illness and that it’s not in your head and it’s nothing to be ashamed of maybe it inspires more men to share their story too!
All the best and Thanks again for reading.