Whilst it was earlier than this time last year I started to become aware my ME was flaring up again, it was at the start of the Edinburgh Fringe when I really had to admit I wasn't coping and my ME was back.
I had booked the week off to "do the fringe" and after a night out Coburg House (an annual favourite of mine) and some drinks at a local art and music show on the very first night of the fringe, that was it. I did pretty much nothing else and since then I can count on the one hand the number of full time weeks I've managed to work or times I've managed back into town at all ...and I'd probably still have a couple of fingers left over to flick the Vs at ME!.
I'd started this blog before all this of course, so how has my mission to stay happy gone in the last year? Well, ME certainly makes that a whole load tougher, that's for sure but I think I'm lucky that I'd been working on coping strategies before ME took hold which gave me some useful ways to cope or at least try to cope with the challenges I've faced.
So at my ME anniversary, what have I learnt about myself and life with ME?
Please, as always, remember that my ME is much much milder than a lot of other people. I can only speak to my own experience and appreciate that what I've been able to do and how I've been able to manage might not be so easy or possible for others to do.
Self care is hard
How many times have we been told by someone to look after ourselves? It's much easier said than done. I still get it wrong sometimes but have become much more vigilant at checking on myself, understanding what it is I really need and being okay with putting myself first. Even just accepting that resting is a good thing to do, it's not being lazy and you aren't "doing nothing", you are allowing your mind and body to recover, refuel and refresh. It's so important to rest, we really all need to do more of that. Read more in my Self Care post.
Letting others help is even harder
Thank goodness for bossy friends! Only kidding, well sort of! I've been told off so much over the last year for not asking for help, for not accepting help and not relaxing enough when help is being given. I think I'm getting better at not feeling guilty when I get help. I used to get genuinely stressed out and over analysis whether or not I could have done something myself or how I could pay that person back which of course defeats the purpose of them helping me in the first place as I end up just tiring myself out with worry rather than activity!
One thing in particular a friend said to me as she emptied my dishwasher while I sat in my "supervisor's chair" (where she'd just banished me too) has stuck in my mind: "yes, you could do this when you feel better, but I'm here and I can do it now, so you can do something nicer with that energy later on". People really do want to help, it's okay to let them and it's even better not to feel stressed or guilty about it!
Speaking with others who genuinely understand can make a big difference. When I first experienced ME there was no online community, Facebook etc just didn't exist. This time round I've found out so much more about my condition and had support from others experiencing the same thing. Knowing you aren't alone and you aren't the only one going through something can be incredibly comforting, especially with something like ME which is so often doubted by people and not understood or recognised by others, including some in the medical profession. Knowing it's "not all in your head" is a genuine relief and knowing groups like MEAction and are out there trying to help you and are fighting on your behalf can really keep you going and feel less isolated.
I wouldn't say I was particularly well off but I am still able to work and so am lucky enough to have a regular income. As I don't spend money on a social life, holidays etc anymore (thanks ME!) I am in a position where can afford to pay for things that will help me. I have a cleaner now so I can relax in a clean tidy house without making myself ill trying to hoover or clean the bath! I pay for food delivery and I can afford to buy ready prepared food when I need it so I don't need to worry about not being well enough to feed myself. I've bought things like stools to sit on in the kitchen and bathroom and I have regular massages to help with my pain. Probably most significantly I've gone part-time at work, something I know many couldn't consider for financial reasons. Money doesn't bring you happiness, I completely agree with that but as sad as it is to say, I tell you what, it can certainly help reduce some challenges.
Having a sanctuary
My house is absolutely my sanctuary (read more in my post Looking after future me and Little Things I seem to talk about this a lot!). I like to think it's a calm, comforting place and certainly friends who have stayed here say they feel relaxed and like it's a little retreat! Every room has (at least!) one spot perfect for relaxing in so wherever I am I can just sit (or lie) down and rest if I need to. My garden (aka the sitooterie) has also become a place I can sit and enjoy. I have made a real effort to make sure my home works for me and it does. It's definitely a feeling of home sweet home for me!
Yes, doing nothing is perfectly okay but when I do have some energy it's nice to be able to do some things. Also I'm a fidget and easily bored so I struggle with doing nothing for long when I'm well enough to do something.
I can't do all the things I used to do, no more long walks along the canal or going out to craft workshops, even popping down to the library or going out for afternoon tea are still not things I have been able to manage much but I've been able to find other ways to still enjoy some of the things I liked before.
I don't craft as much as I used to and can't get out to meet crafters any more so I set an online craft challenge group so I still get to chat about crafts and share ideas and project updates. I also signed up to an online book club and listen to audiobooks and podcasts a lot more so if I'm too tired to read I can still enjoy a good story. I would still love to do all the things I did before but I'm trying hard to adapt and still live my life the way I want to as much as I can. A favourite quote of mine from Grant, a 6 year old who is a little person is "there are some things that are hard for me but I can get creative and can do it. I can do anything".
I know many others aren't able to do some of the things I talk about here. They can't physically manage as much as me, they may not have the support around them or do or their passions in life aren't as easy to adapt to life with ME as mine have been. I'm incredibly grateful to those who have helped me through this past year and I honestly do appreciate just how fortunate I am. I don't know how long I'll be like this, if it will get worse, improve or stay the same. All I can do for now is focus on what helps, learn from others around me and my own experiences, and try to remain Happy Barnet