My Mental Health And Chronic Illness Story
Thank you to Paul (@paullongbottom on Ouchie) for sharing his story with us.
Okay so where do I start?
I guess the best place would be the beginning.
But when did it all begin?
When it was noticeable?
Or was it many years ago?
I’m not too sure I fully know the answer to that as yet, however, I know when things started going awry for me and when symptoms were apparent and causing problems to my day to day life.
For this I’m going to take you back to to 2010 and give you some background about me and what was happening and what I’ve done and do to try to keep pain, stress, anxiety and depression in check, to minimise their effects on my life.
I’ll take you through my journey from then until now. I can’t talk about mental health without talking about my other health issues, so I’ll be talking about living with multiple chronic illnesses too.
January 25th 2010
My sons 11th birthday. Celebrating with his mum and dad and family and friends. By this time we’d been together 17 years I think (I really struggle with timings and past dates) and married for 5 years. Everyone was happy, enjoying life. And I’m Fit and healthy with no issues physically or mentally.
Skip forward a few weeks….
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 Metres 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, 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 ‘
So I’m home all day. In pain, so tired, depressed, anxious and withdrawn. Zero energy and on so many new and changing strong pain medications and antidepressants. My head was all over but I was ‘away with the fairies’ almost zombie like. There but not there.
I’m not sure how long this went on for and at a later date a health psychologist will tell me I had a massive mental breakdown. I wasn’t really aware at the time.
At this point I have fibromyalgia, ankylosing spondylitis, rheumatoid arthritis, raynauds phenomenon, degenerative disk disease, anxiety, depression, nocturnal epilepsy, restless legs and arms.
Now might be a good time to add the medications that seem to be working for me.
At times I think to myself do they even work?, and then I accidentally miss a dose or two and it’s then I know they do help.
Unfortunately they don’t take away all pain, the combination I’m on makes everything slightly easier to deal with for the most part. And what works for me may not work for others.
I’m not going to state dosage or frequency, and as I’m in the UK, the medications could have different names elsewhere in the world.
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!
Over the years I've been to my GP and pain clinics, I’ve seen a health psychologist and I’ve had group pain management sessions and a 1-2-1 with a health and wellbeing 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 we refer to good and bad days. I feel it’s more a case of bad days and bad days that are easier to handle.
I try to do the best I can to keep the bad days to a minimum using the different ways I've have learned to manage this condition.
So although 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 realise. For example if you wake up and imagine you’re going to feel crap today then the 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 realised I was searching images and I got more than I bargained for!!!)
Turns out it's not just short for Cognitive Behaviour 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 judgmental 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 anyone, 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 that you can't break your leg and by the power of thought alone 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 it’s not the best for me. 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 you’re 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 has changed but to me, at the time, it was.
I wasn’t dealing with anything, I wasn’t even aware I was supposed to be, I was just drifting through the days.
As if things weren’t already bad enough, I did something that I’d never ever done before. Totally out of character, I clearly wasn’t myself, and that might not be an excuse, but it’s a valid reason.
I became someone else, I’d created an alter ego and because my days were empty that alter ego eventually took over.
My wife at the time asked if I knew how crazy that sounded and that it’s not normal !! during a heated argument when I told her this and said I did know how it sounded, but this is mental health. It doesn’t follow the rules of normal.
Like I know some of my anxieties are ridiculous, but it doesn’t stop them affecting me badly.
I’m not excusing my behaviour, I’m just telling it as it is. What I did was wrong. For the first time in the 20 year relationship I cheated. And she found out before I could tell her. It wasn’t an affair. I wasn’t running off into the sunset to live a new life with them. Not that that makes it any less damaging.
Only she didn’t just find out that her husband slept with someone else, she found out that I was gay.
So a terrible time for all involved.
My son is now 20. We don’t see each other. But we do text fairly regularly. The hope he’ll be back in my life properly some day has kept me alive more than once.
So I had to come out as disabled, i had to come out with having mental health issues and I had to come out as being gay in the space of a few months.
Again I’m never asking for sympathy, I’m just saying a lot of ‘big stuff’ happened all at once.
The life I’d had and known all my life was now gone. Along with my son the car and the house, some mutual friends, all hers and her family.
As you can imagine at this point I didn’t know if I was coming or going or which way was up or down!?
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 housemate, he helps me so much. I honestly don't know what I'd do without him.
I’m also part of and co-run a local fibro group, it’s a Facebook 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 and 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.
I’ve 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 4-5 years ago.
I have to admit I used to think stress wasn’t a thing, and that depression just meant you were really, really sad. I guess stress was there, it just never seemed to affect me.
So yeah that’s now me, suffering with things I knew were real, but totally underestimated the effect they have on a person, their life and the lives of those around them.
Stress on the other hand is now even easier to wave away.
Stress causes my fibromyalgia to flare up.
For me stress equals pain so I’ve learned not to get stressed out about things.
It doesn’t help in any way.
I let a lot of stuff go over my head.
I have to.
A good support system of family and friends is vital. People that know you well will recognise if you’re not yourself.
Humour is a must.
I like to laugh and I like to share that laughter.
It is a good medicine for many things, but actual medication is also very helpful in this journey.
It helps make things less likely to trigger you.
Eating healthy is beneficial all round, illnesses or not. Food is fuel and things don’t work properly with no fuel or the wrong fuel.
Exercise if it’s possible. For me vacuuming and bathroom visits are exercise!
Fresh air is good for you, if you can’t get out for whatever reason, stand by an open window for a few minutes.
Mindfulness is a great technique , it’s just another word for distraction to me, if your mind is busy it won’t have time to plot against you lol.
Pets can be so beneficial too. It’s well known stroking a pet lowers your heart rate.
My cat is very loving. He knows when I’m in pain he knows when I’m feeling more than sad. Concentrating on his purring helps clear my mind. He often helps me nod off with his purring too.
He always seems to be around when I’m feeling down. Even when I don’t feel like food he reminds me if I forget his!
Which in turn makes me get something to eat too. Finding one positive thing in a day full of negatives is helpful too. Even if the only positive you can think of was really enjoying a chocolate bar!
Thanks for reading.
Best wishes and gentle hugs.