So in a way I feel that if I post about negative points post transplant I will be doing others a disservice, will appear ungrateful or would dissapoint others. But this blog was always supposed to be honest and if I can't be honest there is literally no point writing. Also I have recently realised that by sharing negative as well as positive times doesn't diminish a gift that even if no one else believes me, I am eternally thankful for, neither does it diminish other people's struggles.
At the moment I'm having some bumps in the road. As I have mentioned before I have a virus Epstein Barr virus that is related to glandular fever. Because I am immunosuppressed I will never be rid of it and the level in my blood will jump up and down randomly. Unfortunately this makes me feel pretty bloody awful. If you have had glandular fever you will know the crippling fatigue that comes with it, imagine that this just randomly hits you for weeks or months at a time for the rest of your life and that's what it's like right now. Recently the level doubled in a week and was the highest I've experienced. It's been a scary time not feeling well and not knowing what's been going on. My hospital were awesome and got me an emergency appointment to check me over. I spent time with my consultant who was amazing taking time to reassure me. As a result of high levels of EBV you become at higher risk of developing lymphoma, which is also pretty scary. So I've been placed on a drug, not specifically for EBV but which might help, there is very little that can help with this particular virus. I'm also getting a Ct scan to check for anything untoward.
I'm not done yet though. I have low iron levels so just got an iron infusion to hopefully boost those up. Constant headaches have been revealed to be the result of severe sinus disease so I have also been referred to ENT clinic to get that investigated, it could also mean a sinus surgery at some point.
Side effects from iron and virus meds are making me feel even worse. I can nap and sleep all night and still be exhausted in the morning. I have tonnes of headaches, stomach aches, joint pain, muscle weakness, nausea, and this bloody uplifting fatigue that makes me want to shut out the whole world and just hibernate.
I want to maintain a life. But it's very hard to balance this and the fatigue. I miss friends, book stuff in, cancel it, get down from being stuck inside. It's really hard physically and mentally. I do a drama course on a Saturday and it's been unbelievably hard to get to it, the people are amazing, the tutors are fantastic and I adore it but it's hard too. Drama, singing etc is what I've always wanted to do with my life. It's kept me going through some god awful times. But even now on the other side of those times it still seems like a dream that won't ever come true. Not because of la k of persistence, effort, etc but because my body and energy is letting me down again. I know people who work, study, live independently post transplant and I feel a world away. I couldn't work or study full time, I definitely couldn't run a home. Im still reliant on my mum despite not wanting to be. It is very hard. The life you see opening up before you is limited and worse than that limited by the body that's always caused you problems. You hope that this is behind you now. I also feel a need to do what I can while I can. There are examples all around me of lives cut short or broken by illness. You are always aware this could happen to you.
It's a really tricky road and hard to navigate some times. It's great to have a drive within you, it's what's for me this far, but does it become a bad thing when you are thwarted by something maybe you can't overcome?
I hope I don't offend anyone with this post it wasn't intended to. I just need to vent some of these feelings in the hope it might help.