I don’t know how often you guys get this but it seems to me that throughout the years of being ill one of the attitudes that seems to come up fairly often is that because I’ve accepted the fact that I’m ill that I’ve just given up. It took me a while to accept that I did have these limitations, I know early on not long after my diagnosis I did end up trying to plan to do too much, I ended up having to cancel plans like going to live bands which affected other people as well as myself and it was mainly because I just didn’t accept or understand how ME would affect me and stop me from doing these things. I just eventually realised that it’s better not to try and make these plans and stick with the smaller scale things.
Of course there are times that I break this rule such as family holidays or big events but I still know my limits and have learnt to recognise the warning signs telling me to stop or accept the way I’ll be feeling afterwards. The thing is that even these things that are big for me, going for a trip to see family who live hours away and sitting in the back of the car wears me out for example, wouldn’t be a big thing for most people. It’s surprising what takes up energy and you only realise these things when you don’t really have any of it to start with.
Over the years of having ME I have learnt to recognise the warning signs my body gives me and I know the things that will trigger a flare up, some physical things that seem like they’d take more energy seem to affect me less for some reason than others and it’s been a bit of a balancing act, often failing, to find these things out.
I think that one of the hardest things about having ME, especially early on, is actually accepting it. The fact that there is no cure, there’s only ways to help reduce the symptoms, there are a hundred and one miracle cures that have popped up over the years, treatments that claim to have helped people or have been mentioned by others to try and, although it is good to try new things, I am yet to find one that has worked. It doesn’t help that half of them are disproven in later studies or expensive and seem like they’re taking money from vulnerable people who want to believe in them. I know everyone’s trying to be helpful and, in some cases, the things are new and I haven’t heard of them so I look them up but a lot of the time it’s things I’ve seen, read about and either tried (acupuncture seems to be one I’ve been recommended a lot) or found that they don’t really have anything behind the rumour of them helping.
Saying all of this I haven’t given up hope of there some day being a miracle cure or them finding out the reason for people having ME, though to be honest I think it’s become such a blanket term it probably covers a variety of illnesses now, but I’m being realistic. This is going to sound so pessimistic and I’m not, I’m generally an optimistic person and have a very positive outlook on life even with all the obstacles of ME, but I think that there is such a thing as too much hope, when it leaves the area of what is realistic and you’re just grasping at anything that has been rumoured to help and spending a lot of money doing it. Maybe it’s just me, but I will wait until there is scientific proof of this miracle cure rather than risk my energy and health chasing it when it doesn’t currently exist.
It really doesn’t help when people see this and think I’ve given up, just because I can’t do these things and say I don’t think I’m up to something doesn’t mean I don’t want to do the, I just know my limitations. I know that if I go out shopping I’ll spend the next two days recovering. I would rather do my shopping online and then have the energy for a quiet wander round the town and sit and have some coffee and enjoy it than go out with a shopping list, things I need to get and use all my energy worrying about how I’m going to carry the things to the car or standing in line for ages waiting to pay.
Staying in a lot also does not mean I’ve given up. It’s hard to understand when you don’t have to worry about your energy levels as much, the Spoon Theory is a very helpful way of explaining it really if you need to. It’s a case of working out each day how much energy you have and, although you do have to push it sometimes you don’t have the luxury of pushing it every day without there being any consequences. I’ve done too much before and ended up feeling like I’ve gone back months in my recovery.
I guess recovery is an odd word to use with ME, for a lot of us we won’t recover, at least not to 100% of what we were. And accepting that is part of having ME, and probably a lot of chronic illnesses. We know that the days of being able to do things without having to think about our energy levels, without having to weigh the positives of doing something and the consequences are probably gone. And accepting that doesn’t have to be a negative thing. Knowing what you can do, enjoying what you can do rather than thinking about what you can’t, that doesn’t mean you’ve given up. It sometimes feels like people think that when they ask why you’re not going out or not doing some event or other but it isn’t and all of us who have chronic illnesses know that, it’s just hard to accept it yourself sometimes.
Having said earlier about no miracle cure I know there are some treatments that people have tried that have helped them a lot and that’s great for you, I love hearing success stories, so if it works for you then great. I just find that sometimes when I say I have tried something and it hasn’t worked or I haven’t tried something, often because getting to an appointment itself takes so much energy I don’t have any for the treatment which more often than not requires energy to do, there’s that feeling that they think I either haven’t tried hard enough at it or I’ve given up too quickly.
At the end of the day all of us with chronic illnesses know that we have to balance life and our health and at some time or another we all have to accept this. It doesn’t mean we’ve given up or that we’re being pessimistic, we’re just realistic about what we can manage. I just hope that people without a chronic illness understand this and that we can all support each other with what we can manage and what we can achieve. Although pushing yourself sometimes is a good thing, try not to do it too much to prove a point as you’re the one whose health is going to suffer, do it within reason and know when to stop.