More of the same, ahead we go…
My health has been so up and down of late; most of which needed some attention, I was completely unphased by my birthday on Monday!
Processing and accepting where things are heading with each new issue is hard. And coping with anxiety doesn’t make any of this any easier; not that it would be easy without the anxiety..
I’ve had some time off work because I’ve been too unwell to actually do my job. I enjoy my work and I love doing my job, so believe me when I say that I do not enjoy my time off sick. I sit at home, looking after my body when all I want to do is punish it for being so shitty. But that won’t actually help; I need it to get better at functioning like it should. So whilst my body recovers from everything that being thrown at it, my mind needs some healing too. It needs to be reassured that this anxiety is normal – to a degree – and my acceptance of my reality is important to keeping me grounded; as well as the reminder that one day is all I can affect – yesterday is gone and tomorrow is not here yet. All I can do is my best in one day. And if my best is only getting up and changing my stoma bag, showering and eating; so bloody be it.
Some of my time off was down to pain. And the lack of pain management I was receiving for my rectal stump. Yes, this 30cm piece of bowel is the bane of my life, right now. It was causing me unbearable pain; so much that I couldn’t sit down normally, I was having daily discharge, I was experiencing some wonderful cramping and aches in my lower back, as well as a loss of appetite. All of this information as given to my IBD team and I would be reviewing prior to my Vedolizumab infusion, meanwhile I would need to have a nightly dose of Amitriptyline to help combat the restless sleep I was having.
When you have multiple issues, you have to weigh up in your mind which particular one is the main culprit. And I can tell you, that part is the most exhausting because you wonder if its your body, your meds or it’s just you being paranoid. It is hateful.
I managed through those couple of days without working, so I could manage my pain at home – thank you employer for being so damn understanding and supportive! – then I pulled my tired, fatigued and slightly drugged body to work on Friday, prior to my infusion. Work did wonders for my mind – the focus on anything but myself and my problems was a revelation – but then it was hospital time.
No perianal fistula or abscess – fucking ace! Both things terrify me.
No discharge present; but I assured the registrar that it is daily and it is painful to shift, even with my enemas.
The pain in my back was a concern; MRI scan of my pelvis ordered.
They recommended keeping me on my nightly dose of Amitriptyline and to review in clinic in 11 days time.
They also recommended changing my enemas to steroid ones! Yay – not.
I can not fault my hospital, nor the IBD team for their care and attention to me. I am painful aware that I am a troublesome patient; and whilst I joke about it, I am so grateful to be treated with respect and the attention I deserve. Sometimes – very occasionally – I feel like a burden and that I am making ‘a mountain out of molehill’ but I remind myself of just how quickly things can change, with reference to last year – see here for a more detailed look.
I went on to receive my Vedolizumab – infusion number six; a milestone I have never achieved with Vedolizumab in the 3 years I’ve been on and off of it – and I left feeling a great sense of achievement, underneath all the fatigue.
I’ve slept alot since then – five days ago. I am thankful to be off work and on annual leave so I can get some well deserved rest. And my pain in my rectal stump is almost gone. I am following their orders and keeping up with my Amitriptyline, but I haven’t had to use any secondary pain relief, as of yet. I think it is interesting that my pain was only for the last ten days before my infusion, and now is down to practically nothing. It will be beneficial to see if this pattern occurs again in six weeks time.
So yes, my health has overwhelmed my days leading up to thirty and some personal challenges have meant that being thirty has somewhat forced me to grow up. Not through any pressure from anyone, but just by me. And it’s not a big, overwhelming pressure; it’s just one that is gently nudging me to take responsibility and be better; in all aspects of life. To act, how I want to be treated and to be honest. To be real and true.
I’ve had a date for my MRI scan, I’ve got my GI clinic appointment too; as well as B12 coming up. Meanwhile; I’m still tolerating my current dose of anti-depressants and I am trying my best to keep my work life separate from my blogging and personal life. Whilst I want to share, I also want space for myself. Selfishly; maybe but it’s needed.
Until next time,