May 9 – “This past weekend has been rough – my body feels like it’s falling apart beneath my skin, uncontrollable; fighting against itself – the epitome of connective tissue disorder.”
Warm weather is a rarity in northern England, so I try my very best to go into the garden whenever my PoTS and ME allow it, so when we received a warm Saturday afternoon I figuratively jumped at the chance to spend some quality time with my mum and dog in the sunshine. So much so we decided to have a quarantine picnic, however I didn’t expect to experience a shoulder subluxation over a mouthful of hummus; it’s safe to say this was NOT on the menu. As usual I tried a combination of stretching, trying to relocate the joint, pain relief, and massage but as the pain started building I knew that I had to go back inside and face another solemn reality of my chronic illness; the unexpected can steal these moments away.
However as chronic illness warriors do, I battled on and continue to take each thing at a time – not think too far ahead, and focus on symptom management; but the tension from the pain was growing beneath the surface – causing a sense of restlessness and irritability. There’s only so much I can do to try and control my pain levels but joint subluxations and dislocations f*cking hurt, and we do amazingly well considering the sh*t we have to put up with on a daily basis. Yet I couldn’t settle, I just wanted to scream but felt so fatigued and mentally drained that it remained a constant urge, building slowly as the day went by.
May 10 – …Uh oh
After breakfast and resting up after a poor night’s sleep in preparation for virtual quiz night with my best friend, I came downstairs to enjoy our Sunday meal and watch a film. My pain began radiating into my neck and nearing the end of quiz night I found myself growing more and more uncomfortable; so my immediate instinct was to ensure that I make myself as supported as possible – but in the process of getting to my stairlift I felt a familiar searing pain in my joint, followed by a deep burn and the knowledge that my joint was out of place in its entirety. Not exactly an average adult sunday evening – maybe they should start sneaking me into Hollywood rom-com sets just for a bit of representation(!)
It has been quite a difficult few days, and I was understandably feeling upset, slightly emotionally fragile, and overwhelmed at how restricting my chronic illness is. The difficult realisations that your health is progressively becoming harder to manage in keeping with what you mentally feel competent of achieving and want to experience…it hits different when you feel like you’ve been forced to give up or turn down so much already.
This can be quite discouraging, and in all honesty my hopes for the blog have proven to have been unrealistic; not that this is necessarily a reflection of my potential, but it leaves a bit of residual self-doubt behind – WHICH WE DON’T LIKE! Thanks to the amazing support from my friends in the chronic illness blogging community, I feel empowered to keep trying to grow my blog alongside my Instagram audience; and to stick to an upload schedule.
Therefore I hope you an all join me by pressing the follow button, and tuning in to my blog every Sunday at 6PM (GMT). Once you’ve done this subscribe for alerts on your Google calendar by clicking here.