I may have mentioned this once or twice before in previous blogs. I started experiencing bowel issues around the age of 14.
Initially I ignored it thinking it was just one of those things that would sort itself out with time. But the weeks turned in to months and I was turning up to school late, running out in the middle of lessons and growing increasingly concerned about leaving the house in case there wasn’t a toilet available.
I couldn’t talk about it with anyone. My family weren’t the talking or understanding kind.
After about a couple of years of putting up with the issues, I found the courage to go and speak to my GP. I explained my symptoms and this GP didn’t seem to think it was anything serious and put it all down to diet; advising me to eat healthy and stay away from red meat completely.
In the early days my symptoms were almost entirely all in the morning and after I had emptied my bowel, however many visits to the toilet or however long it took. I was good to go for the rest of the day. Occasionally I would need to go again during the afternoon or evening.
As my symptoms affected me the most during the mornings, my studies were affected massively. My GCSE grades weren’t brilliant and then things got worse at College because I’d end up missing whole classes in the morning, most days.
I had big dreams of going to University and a career in Aircraft Engineering. That soon vanished because of IBS & my inability to openly talk about it & reach out for help.
Looking back, I don’t think it would’ve made much difference if I had talked about it & asked for help because very little was known or done to address symptoms of IBS at the time. IBS was mostly seen as a female issue back then, specifically women over a certain age. Even now, GPs aren’t trained or very knowledgeable & see IBS as either diarrhoea or constipation issue. They don’t understand how life changing IBS can be & what effect it has on a person & how it’s different for everyone.
Without going in to all the horrible symptoms I experience and a long & detailed list of how it affects me. I’ll briefly mention some of the the ways IBS impacts my life:
• I am unable to leave the house until I feel satisfied I will not need to go to the toilet.
• I can’t do morning appointments at all!
• Employment is seriously limited due to it & most of the labour market operates 9-5 hours of operation. Employers do discriminate.
• Having to constantly find ways to get things done in the afternoons.
• Miss out on family time, all the time where travel is needed or it’s a morning thing like going on a school trip or attending a school performance.
• Long haul holidays are completely off the agenda.
• All holidays abroad must be evening or late afternoon flights, short haul, hotels/resorts must be close to the airport etc. And any excursions must accommodate IBS needs.
Think the bullet points above will have given a sense of what it’s like to have IBS but it doesn’t end there. There’s the constant fatigue that comes with having IBS (and Fibromyalgia – which I will talk about shortly), the depression, anxiety and not to mention financial difficulties. It’s a vicious circle…
My very first episode of Sciatica was in 2014. It came out of nowhere; woke up one morning unable to put any pressure whatsoever on my feet, particularly the left foot, without being in absolute agony.
First GP I saw, prescribed Co-Codamol & put it down to muscle pain and sent me on my way. This episode lasted for two weeks! I was off work during this time, housebound and just about managed to get the basic stuff done.
After much effort with GP practice staff, I got another appointment and this time the GP I saw said it was Sciatica and prescribed me some painkillers that actually worked, it took a bit of time but it worked! The pain was much more tolerable since I started on Naproxen. However, both Naproxen and Co-Codamol affect my IBS. So, there’s no winning!
Sciatica has become a permanent fixture in my life and affects me every single day. Some days are more painful than others. Thankfully, I haven’t had a repeat of the first incident and have been able to work through the pain taking Naproxen when needed.
Unless you’ve experienced Sciatica, I imagine it’d be quite difficult for you to imagine the level & kinds of pain I or anyone else with Sciatica has to endure.
For as long as I can remember, certainly from my teens anyway. I’ve always had back, neck & shoulder pains.
Been to GPs countless times over the years & always fobbed off with you’re too young for it to be anything serious, go & eat health and do plenty of exercise.
Over the years I pretty much avoided going to the GP unless I had an infection of some kind. Mostly because I found them to be absolutely useless, unhelpful & uncaring.
About two years ago, I got fed up with all the aches & pains everywhere and downloaded a diagram of the human body. I printed this off & notes all the areas on my body where I experience pain and examples of the kinds of pain.
I booked an appointment and took my notes with me. I showed this to the GP & was dismissed, no surprise there! Left the surgery completely deflated as I really hoped that after seeing my notes, I’d get taken seriously & referral would be made to some kind of pain specialist.
After a few weeks, I tried again with my notes & this time the GP I saw referred me to see a Rheumatologist. To me this was progress; I wasn’t expecting any miracles, cures or immediate answers but at least I could have the opportunity to explore why I was getting these symptoms.
My hopes were quickly dashed when I received a letter from the hospital stating the Rheumatology department was incredibly busy & would send out further communication when they had an appointment but this could take several months, maybe longer.
A couple of months after receiving this letter, I had a phone call from the Rheumatology department asking if I can attend Saturday clinic as they’d started running additional clinics to get on top of the backlog. I jumped at the opportunity & took the first appointment I was given.
I made further notes & dates when the various symptoms began, which I took with me to my appointment.
The Rheumatologist I saw, based on what I had said believed it was Fibromyalgia.
Fibromyalgia was at the top of my list, from all the research I had done over the years. Now I had an expert backing it up.
Finally, I can say to people that I’m not faking it, it’s not made up in my head, I’m not exaggerating & what I’m going through IS invisible BUT it’s definitely REAL!
Here’s a link to the the NHS website detailing symptoms of fibromyalgia https://www.nhs.uk/conditions/fibromyalgia/symptoms/
Since the diagnosis I’ve been doing various bits of research to manage my conditions as the support from the GP and hospital has been/is non-existent. And the only thing the GP is willing to do is prescribe antidepressants for the pain.
There may come a time when I have no choice but to start on antidepressants but as long as practically possible, I will avoid them. I’ve seen far too many people and read personal stories of more, who have suffered greatly by taking antidepressants.
IF you’ve managed to read my (very) personal story. Well done! I know it was long & assure you I did my best to keep it as brief as possible.
I have request, if you come across anyone with an invisible illness please be understanding & show some compassion. They’re not seeking attention, faking it or asking for sympathy. In addition to the illness/es, there will undoubtedly be a whole host of other issues they’re dealing with, so be as supportive as you can.