I've been finding accepting my illness difficult recently. It's fairly normal for me to feel this way after a significant reduction in ability. It just seems unreal and unfair and I just can't get my head around the fact that this is how my life is for now.
I still see the state I'm in as temporary, and I mean properly short-term, not just being hopeful that things will improve in the future, which would be a helpful attitude to have. My current attitude makes it difficult for me to contemplate making big decisions about things like my university course, because I'm still thinking that there could be positive changes just around the corner. Accepting that that's now not particularly likely is really difficult. I am now living with my new level of function following my relapse, I'm not sure I'm going to come out of this relapse any further, for now. I've been significantly more ill for 8 weeks now, if I was going to bounce back, I would have done by now, judging from prior experience. I hate admitting that..
Talking to my psychologist the other day, she was saying that the people who have eventually made the most progress with their condition, in her experience, were those who had learned to work with their condition instead of constantly fighting against it. It makes sense- it gives your body a bit of breathing space to be able to recover rather than it being pushed to the limit (and beyond) all the time. But to work with the illness I have to accept that it's part of my current reality, and accept it's current severity as well as it's existence. I'm finding the prospect of that hard.
I need to feel more in control of my condition and therefore I need to recognise what I can do to influence the day-to-day symptoms my condition causes. I can rest, I can take my medications regularly, I can attend all my appointments, I can make sure I eat a high-calorie high-protein diet, I can be kind to myself and focus on looking after myself. These things are things that I have control over that can help me have some level of control over my condition. Some of these are actually made more difficult by the condition itself, but I have to accept that and also accept that I will never have absolute control, but I do have some control.
I need to see that there's a middle ground between fighting this illness every step of the way and completely giving up. I need to learn that I can do some of what I want to do, but not all of it, probably only a minority. I need to learn self-control and how to say no, for the sake of my health, even in difficult circumstances. I need to accept that I need to respect the limitations this illness inflicts on me.
What I find even harder to accept than the illness' effect on me, is the effect it has on all those around me. I keep having to cancel things at Uni, which has an effect on other people, I'm having to rely on others to do things and I just can't contribute in the same way that I used to. I hate that, I feel like a parasite- living off and draining the resources of others.
I have a few appointments coming up and I'm trying to stay hopeful but realistic. I need to have reached some level of acceptance of where I'm at to be able to share my current reality with those looking after me medically. I need to get across the devastating effect this condition is having on me to the consultant overseeing my CFS care, so they can understand where I'm at, even if there may be very little, if anything, that can be done about my deterioration. I'm also seeing an upper GI surgeon for the first time- I need to not let my CFS get in the way of me getting all my symptoms and their severities across to him- I need to find the energy to write a list of symptoms in advance to jog my memory in case of cognitive problems or speech issues resulting from fatigue. I don't like hospital appointments- but they're my only way of possibly getting any answers- I need all the help I can get at the moment, so I need to accept that they're part of my current reality.
I came back to Uni after an extended break, and initially tried to rejoin my course without taking my deterioration into consideration. I pushed myself through day 1, and unsurprisingly ended up in bed, very unwell, missing days 2 and 3. I contacted people about course adjustments, realising there was a definite problem, and returned for a lecture on day 4 and an afternoon on day 5 (in addition to a medical appointment). It's now the weekend and I've been feeling really ill- I could feel that I'd seriously overdone things on the Friday, but it was still a lot less than I used to be able to do, so I have found the level of payback frustrating. Even though I know I'm significantly more ill, having it so blatantly proven to you, is undeniably difficult. The discussions about my University course are going to be very challenging, but will hopefully be the start of a change in attitude. I hope I will start being kinder to my body, fighting against it less, and will start to push it to it's limits less, giving my body a better chance of making some improvement.
That being said, I was in bed a majority of the time for 4 weeks, and it appeared to do me very little good at all, which makes the idea of taking a step back and doing less, to leave my body with some spare energy to heal, even less appealing. I need to recognise that I was quite possibly still pushing my limits while in bed though- I was severely unwell and was pushing myself by sitting up as much as possible, I was listening to music and watching some TV, I was venturing downstairs and eating. All these things are tiring while this ill, so perhaps I was still not allowing myself extra energy to improve. I had a few days where I knowingly really pushed my limits, so some of the time in bed was spent recovering from additional flares/payback, rather than the underlying relapse.
I know I need to accept this illness and my current reality, but I keep finding myself feeling cross with myself- my body and my condition- for not just getting better and allowing me to do what I want. I need to learn to be ok with being ill. It's been 4 and a half years, I need to accept that. Relapses always take me a step away from acceptance, because they're incredibly difficult- physically, mentally and emotionally- this relapse was particularly brutal, so I suppose I've still got a long way to go before reaching my goal of acceptance.