Improving health is a complex business

I’ve been watching myself like a hawk since my Ferinject treatment trying to work out if I feel better for it. I do think that there is some improvement in my underlying energy level, but it’s difficult to say for sure. I had a headache for most of last week which may have been a side effect of the infusion or due to my turbulent hormones. Hot flushes have ramped up to their summer level again since my last unexpected and very unwelcome period ended.

Having a semi-permanent headache and waking 5-6 times and getting up 2-3 times for a pee every night isn’t exactly restful. But still, given all that, I’m not doing too badly in terms of keeping on top of what needs to be done and I don’t feel as fatigued as I would expect to be as much of the time. So I’m hopeful that the treatment was worthwhile.

Why should improvement be complex? Because if this treatment turns out to give me a sustained significant increase in my available energy, I’m going to have to make some big adjustments on many levels. I’m adapted to being utterly exhausted nearly all the time, my habits and behaviours reflect my fatigue, my muscles are deconditioned from enforced inactivity, my working, social and creative lives have contracted to almost nothing and I’m often low in spirits due to all the losses that I’ve accrued since I’ve been ill.

With more energy at my disposal I’ll be able to do more things, which is great, but as I’ve already found out more activity leads to very painful muscles and joints. So I need to think about gentle ways to improve my muscle tone and build up confidence in my body again. I may also be able to start rebuilding other aspects of my life and that will be an even greater challenge.

Being too ill to do anything except survive on a day to day basis does at least save you from making decisions about what to do. The thought of creating an “out in the world again” life from scratch is more than a bit daunting. I don’t know yet whether I do really feel better or whether it’s just wishful thinking, and anyway much is uncertain and in flux as I go through the menopause.

I guess the fact that I’m even thinking about possibilities and issues is a good sign, but I do feel rather adrift in a sea of uncertainty at the moment. I didn’t expect that when I asked for the treatment, I was just desperate to feel a bit less shitty. I certainly didn’t consider how alleviating a debilitating symptom that I’ve lived with for years might change my life.

One thing is sure – my gut is functioning a lot better since I stopped taking oral iron! I’m due to have a blood test on Friday, which that will give me a better idea of whether my sense that things are improving energy-wise is supported by a measured increase in serum ferritin.

I don’t think that elevating my serum ferritin level is going to be a miracle cure for my ME/CFS, but if it is, I’m going to be fucking pissed off that no medical practitioner has ever suggested it as a treatment option. So that will be something else to deal with.

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One Response to Improving health is a complex business

  1. alcsmith says:

    I admit that I often worry that getting better will mean returning the way I used to be – pushing myself, working more than I want to, not allowing myself to write, etc, etc. I also need to remind myself to not become so identified with the condition, that it becomes a central part of how i am seen and how i see myself, because otherwise I may not want to give it up! This is similar to my being a vegetarian. To an extent I am still one after 24years because it is one way I identify myself.

    These thoughts are always at the back of my mind, that being ill has both negative and positive aspects. Getting well might mean needing to let go of the positive, though I am trying to see that there may be ways of bringing the positive with me, e.g. being assertive and clear about what is important in life. Fear and excitement are a natural part of change.

    The above may not apply to you, but your post made me reflect on these. Also I am feeling quite a bit better at the moment energy and mood-wise, though the pain, as usual, has conversely got worse. As a result I am falling back into rushing, treating things as urgent and loosing the space and calmness that I need. Having said that, I am holding on to a lot more space and rest than I would have done in the past, so I haven’t completely regressed.

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