Experience With Diagnosis & The Struggles Around It
Without a doubt being diagnosed with a long term health condition at a relatively young age, really knocked me backwards. Especially when I was just starting my 20’s and this was “meant” to be the time where I was enjoying life the most and living it to the fullest. Being diagnosed can be a rocky road for some people. It’s so draining mentally, emotionally and physically. Yet it also feels lonely too, where occasionally people might not actually know what you’re going through and it can be really tough.
A diagnosis is proven difficult at any age in life. Sometimes you might not feel seen or heard enough. And what I’ve learnt from personal experience, is that you’ve got to speak up for yourself, you’re the only one that knows your body 100%.
The days that feel like months, ongoing. Where you’re in pain, stuck in bed and really have no clue why your body is acting up like this! When I was in this situation just over 2 years ago, it genuinely felt like it was never going to end! Now, forward 2 years later, I know that it’s never going to “end” and I’ve got to accept that. This is the hardest thing about my diagnosis. For the longest time, I felt like my life was never going to be the same again and that this condition was “ruling” my life. However, it was actually pulling me down thinking this way. And this is when I started adjusting the way I do things, to make it easier for myself. As well as telling myself that I’m going to live my life and have fun! There is obviously going to be rough days ahead, as they arrive, I’ll take each step at a time. ( BTW I am still learning! )
The Medication Maze -
After many different treatments that have failed, finding the right one for me is still on the horizon.
Okay so, in the few years I’ve been medicated for RA, I’ve tried a fair few to try and relieve my symptoms. Have any of them really worked? The answer would be not really. A little run down for you: The first medication I was prescribed was “good old” Methotrexate. I say that because the side effects were so bad, getting increasingly worse as time went on. As of right now, this was the medication I took for the longest time, being 13 months.
When I started Methotrexate, it actually relieved my symptoms dramatically and I was just so glad that I wasn’t in anywhere near as much pain I was in previously. For me, medication day was a Saturday, let me tell you I absolutely dreaded this day every week. The nausea, tiredness, flu like symptoms, the lot. That felt like you’d been dragged underneath a bus or something. Meanwhile feeling like this would last a few days, before you know it, it’s medication day again. For any of you that don’t know, with Methotrexate, you have to get a blood test done every 3 months as monitoring to see if it’s safe to keep using. Anyway, when I got the last blood test while I was on Methotrexate. My white blood cells were so low, meaning I could become ill really easily, and it could get worser. So, when I went back to see my Rheumatologist about 2 weeks later. They said it wasn’t really safe for me to continue using this medication anymore, as it was just fucking with my immune system. Okay they didn’t say them exact words but you get what I mean.
Then it was onto the next medication! TBC…
Follow for more! :) Megan x
Quote - “Isn’t it funny how day by day nothing changes, but when you look back everything is different.”