I have a diagnosis. 6 plus years of experiencing pain that couldn't be identified. 6 years of MRIs, X-Rays, blood tests and more blood tests. I've had more blood tests in the last year than I could count which has undoubtedly cured my extreme fear of needles (yes, I used to cry BEFORE getting to the doctors and my mum used to have to drag me....my goodness I'm glad I've overcome that!). 6 years of tears, self-doubt and guilt. But mostly 6 years of pain that no amount of paracetamol, heating pads, ice packs or any other form of pain reliever I could get my hands on could cure, let alone reduce. It's been an almighty battle but a humbling one. My eyes were opened to the world of chronic pain and how it's this completely different universe from the one I used to live in. I felt like I had somehow unknowingly become the "boy who cried wolf". I knew I wasn't lying or exaggerating my pain but somehow that's how the rest of the world perceived it.
I couldn't understand how people couldn't see my pain, I felt like I was either on fire or completely falling apart. There was never a moment that something didn't hurt - and there still isn't. As I type this, I feel my eyes aching from looking at the screen and my fingers starting to go numb. Both of those things will fade eventually but be replaced by something worse. Now I feel like it has become much more noticeable but I am for the most part exceptionally good at hiding it.
Now I will say the random pains I have experienced in the last 5 years are nothing in comparison with what the last year has been like. It's been a whole different ballgame and one that I wasn't fully prepared to experience. But now here I am 3-4 weeks after my doctor's appointment and I'm ready to move forward. I got diagnosed with fibromyalgia. I’m still weary of saying that’s what I have because to an extent I’m not convinced. I mean, I have around 90% of the symptoms present in fibro but I’m also cautious of the fact that many other illnesses have similar symptoms. That’s the hypochondriac in me coming out. I should be happy, right? After years of being in pain and starting to believe that it was all in my head, I have answers. Yet, I feel more hopeless and lost now than I did before I found out. Before you find out, there's hope that it will be nothing and I'll wake up magically feeling better. I don't have that hope anymore, in fact my pessimism towards my health has only gotten worse. I mean, it's hard to see a bright side when you know this is going to be long-term if not for life, right?
The way I live my life now is very different from a year ago. Granted, I was in the midst of recovering from my depression but I was healthier. 2-3 months after I felt like "me" again is when I thought could this tiredness and pain be something more than the aftermath of depression. I continued to be monitored for what felt like an entirety (well, it has been over a year, so no wonder I was losing my marbles slightly) until I finally spoke up for myself instead of agreeing to another type of medication and then blood tests to follow. The diagnosis process is a long-winded story for another blog post (but if something feels wrong, trust your gut!!). I was getting better by leaps and bounds mentally yet psychically I was deteriorating.
The fatigue was the first noticeable symptom that got intense very quickly. I went from being an insomniac surviving on 4 hours of sleep to sleeping 12 hours a night plus 3-4 hours during the day. There were (still are) days where I would get home from work and pass out at 7 till the next morning before even eating dinner. Then the aches and pains became more present. Migraines, constant tingling/numbness in my hands, muscle pain, weakness, nerve pain in my back and legs, sensitivity to brightness and loud noises, burning sensation on my skin and a 100 other things. At some point my stubbornness subsided and I realised none of those things were normal. But for me, they are my new normal.
Physically I don't think I've really let on to anyone how rough it has been to live with a chronic illness. On my worst days it can feel much worse than my depression. I felt hope with depression even if it was just a shred it helped me fight but being physically ill is a completely different battle. I am a positive person (for the most part - I'm sure some people would say I moan about being sick a lot but it's within my right to do so!!) and I try my best to stay upbeat but it is extremely difficult. There's a fight behind closed doors that none of my family or friends see me fight, even my mum probably doesn't see the worst of it all.
It's having to crawl up the stairs because my legs can't manage on their own. It's my hands going numb unable to do anything and dropping things - constantly. It's forgetting things mid-sentence and my memory being the same as a goldfish's (fibro fog is the worst!!!). It's having to nap after a shower because I'm so psychically tired from washing my hair. It's having to lie in a pitch black room in dead silence when a migraine hits me. It's putting sunglasses on in the shops because the light is way too bright. It's feeling like someone is holding a curling iron to my back when the burning sensation hits. It's all my muscles and bones feeling weak, sometimes too weak to bend down or pick something up. It's chest pain that knocks the breathe out of me (I did get this checked out the first time and it's related to my fibro - but please get chest pain checked out!!). It's not being able to sit or lie still for a long time without my whole body feeling stiff.
It is, quite honestly, hell on earth a lot of the time. But every now and then I'll get a pain free hour and thank my lucky stars. I think those of us with chronic pain are so incredibly good at hiding it that when we get a quiet moment, we realise how much pain we're actually in. If this is teaching me anything it's to be gentle with myself, to be kind and to listen to my body. There's a lot going on in there and my brain is slowly learning to remind me to take care of myself. I know I can be unrelenting in my complaining at times but more often than not the pain is so often overwhelming that I need to let it out. My friends, you are little gems for listening to me and letting me do what I need to do right now (and of course my mamma!). This is just the beginning of my fibro story and I plan on complaining some more and bringing awareness to an invisible illness.
Hey there, I'm Jasmine, your average 23 year old working in childcare and living in England. Maybe Tomorrow follows my journey living with mental health issues and multiple chronic health conditions, all whilst trying to have some fun along the way.
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