I feel like I’ve had a challenging week. I’ve got vision problems, and while they themselves are frustrating and worrying, I’m finding the chaos they’re causing even more difficult to deal with. I’ve suddenly had to make appointments and see people, explaining something I simply don’t understand. I’m scared. My vision is incredibly important for my chosen career, so it simply isn’t something I can cope with having a problem with.
I’ve already seen my doctor and an optician. The optician found a change in my prescription compared to my last eye test only 8 weeks ago. She also found weakness of my eye muscles, possibly related to my CFS. She wants me to be seen by someone who knows more about double vision to get to the bottom of my difficulties though. My doctor wants me to be seen by the maxillofacial team I am already under the care of, or neurology, because neurology would be ideal, but the wait would be significant, so if maxfax are willing to look into the problem, it would save time. The optician wants me referred ideally to an orthoptist. I just want the problem dealt with by whoever, as quickly as possible.
Life seems difficult right now. I just don’t know what to think about things, and I’m fed up of the constant challenges. I know life isn’t fair- the last 4 years has taught me that over and over- but there’s only so much an individual can take, and I really feel close to my limit at the moment.
The vision problems aren’t really stopping me doing anything at the moment, when it happens I can still see fine if I shut either eye, but it just feels like an extra thing gone wrong. I’m very likely to have another referral ahead of me, either to orthoptics or neurology. I just hate the idea of starting from the beginning with another health professional. I hate the idea of having yet another set of appointments, and having to explain my medical history to yet another person who will probably not understand what is going on. I want answers, but I’m scared what those answers could be.
I feel guilty because I know there are things much worse that could have happened in my life, and my vision problems are such a small thing when I put things in perspective, but I just feel like I’ve been pushed and pushed over the last year or so. My health has been going continually downhill for over a year- that’s a difficult thing to deal with.
A year ago I could walk fairly well- it made me sore but it wasn’t immediately painful and I could walk a decent distance. I could get around enough that it wasn’t a significant problem. The only support I had was one hour of mentoring per week to keep me organised in terms of deadlines. I had just been discharged from the CFS/ME service because my Occupational Therapist felt that I was managing my condition well. I had just started to get some facial pains, but was starting treatment and hopeful it would be a short-term problem. Unfortunately I was about to have a huge relapse, affecting my mobility in particular, and my general health was about to deteriorate significantly over the year ahead.
Nobody teaches you how to deal with failing health. You’re not taught in school how to feel about it, or how to deal with all the appointments and everything that it necessitates. A small thing can feel like a huge addition to what you’re dealing with when you already have a chronic illness on your mind. It’s so up and down and I do cope relatively well and I put on a brave face and get on with everything a vast majority of the time, but I think sometimes you have to be honest with yourself about how you’re feeling. Right now I admit that I’m struggling. Half the time I feel upset and stressed about it all, the rest of the time I feel numb about everything.
I’ve had enough and wish I could have a break from my illnesses and everything they entail. It’s tempting to just stop taking all my medications, but that would have the exact opposite effect. I feel like I’ve got a lack of control over my illness, it’s bad no matter what I do at the moment. My symptoms have gone from being bad when provoked to just being bad. I have pain and nausea no matter what I do. There’s nothing I can do to stop my symptoms. Even lying in bed having a quiet day today I don’t feel well. Chronic illness is cruel.
I will bounce back. Physically my resilience may have gone, but emotionally it’s still there I hope. I have another appointment about my vision tomorrow and hopefully things will start to look a bit more positive, or at least it will be clearer which path I’ll be going down in terms of referrals or investigations. I’ll cope because there’s no other choice. I might be having a down day but I choose to be positive going forward and I will do all I can to look after myself and my sight.