Getting worse

The question I’ve been asked more frequently in recent weeks is whether I’ve heard from the hospital. This, while showing concern and interest, is beginning to feel like a burden for me.

I haven’t made any more attempts to contact the hospital since exchanging a few e-mails with my neurologist. Basically in August two thirds of this country are on holidays so I figured I would be wasting my time.

However, I did see my first neurologist, the one who diagnosed me, last Monday. There isn’t much she can do about my situation because MS meds can only be prescribed and obtained via the NHS and she only works privately, but I asked her for blood tests and MRI’s. It’s been a year since my brain was last checked, and almost four years for my spinal cord. I’ll be doing them next month.

I told her considering I haven’t been taking anything since February I’m doing relatively well, at least relapse free kind of well. I have nevertheless been feeling more and more tired each day, more tired than I remember ever feeling, even with all the vitamins and supplements I’ve been taking. There’s also been an increase in pain. Whereas before I would just feel my muscles sore once in a while, now it’s like I’m heavily working out every day, when the truth is I have yoga classes twice a week and that’s it.

Yes, I think we could say I’m feeling worse, and the MRI’s will probably confirm I’m getting worse. But the truth is I don’t have great hopes for the future anymore, even if they start me on some drug. When I was diagnosed I was told I would feel better with medication. That made me happy – I thought there was still a chance I could rescue some of my youth, claim back some energy and vitality. What followed were ten horrible months with Avonex until they switched me to Copaxone. With Copaxone the nurse told me it would likely give me a boost in energy. Nothing happened. I feel so cheated and disappointed that I just shrug at the prospect of a new promising drug.

Of course, some of the extra fatigue and pain lately may have something to do with depression lurking. Everything just seems so bleak and uneventful that, even though I’m trying, I can’t seem to make it go away. My sleep is much worse again and this is a very typical sign of depression for me. I wonder if I should ask for another round of antidepressants when I see my psychiatrist in October but after my disastrous experience with fluoxetine I have some serious doubts. Escitalopram kept my mood stable and helped my sleep improve, but didn’t exactly give me a kick and fill me with energy. Fluoxetine was supposed to do that but the only thing that happened was me passing out on the bathroom floor due to excessive sleepiness and spending weekends locked home crying in my pajamas.

Luckily on Wednesday I will be seeing one of my therapists and I will ask her opinion. I never believed in miracle cures, but I never believed in fatalism either. I believed in improvements but I’m just watching things getting worse. I’ve been taking care of my health the best way I can and protecting myself from potential triggers. Most people who know me agree there isn’t much more I can do that I’m not doing already. And life does go on. I will be starting my master’s degree next month. Yay, I guess. I just wish everything didn’t have to be such a struggle.

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11 thoughts on “Getting worse

  1. Yes I think I know how you feel. 7 weeks ago I was given a whole bunch of supplements to take with most people around me saying ‘oh you are going to feel so much better, you won’t know yourself’. Well I feel worse now. Same, more tired, more achey. People then also say ‘ oh it’s because it’s winter’ WTF does that even mean, and I’m pretty sure you’re in summer where you are?
    I’ve heard bad things about fluoxetine, perhaps something would help that was a little less strong?

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    1. It’s definitely summer here. :/
      I think I’ll have to discuss it carefully with my psychiatrist. Some antidepressants are not good for me due to the damage MS has already done. And since I’m still waiting for MS medication, maybe I should postpone antidepressants until I know what MS drug I’ll be taking, due to possible interactions? I don’t know, this is all a big great mess. *Sigh*

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      1. Yes good idea, if you trust their point of view, but you’ve been waiting a long time for a new drug for MS – will it be much longer?

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  2. Although our illnesses are much different, some symptoms are the same and I truly understand the struggles with the medical system and how difficult it is to navigate and make any true, tangible progress. Have you tried Wellbutrin? I haven’t yet but my boss did and felt a massive improvement in both energy and depression. I think it affects energy because it isn’t exactly a typical SSRI but an SNRI or maybe a combination of the two. I have been thinking about asking my doctor if I can switch to Wellbutrin from Zoloft but I’m still undecided and a little reluctant to risk going down a new unknown path with possible side effects and all that goes along with that process. I hope you are able to make some progress soon. πŸ’–

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    1. Thank you so much for sharing your experience and for understanding what I’m going through. So far I haven’t tried any of the antidepressants you mentioned, I’ll probably talk to my doctor about them. I like knowing my options. Even if I end up deciding not to take anything for some reason, it’s good to know you have something to fall back on.

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      1. Oh, I’ve been OK. Feel like I’m treading water right now, which is to say nothing really bad happening, but also no real positive changes on the health front. But have become overwhelmingly busy with some other things, which is why I have been a slacker on writing more often. Hoping to put pen to paper soon.

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  3. I’m sorry you’re feeling worse. I’m also feeling proud of you for starting to work on your Master’s degree anyway. It sounds like you have a reasonable plan to get more information and explore options. Hoping for good moments and better days for you.

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