The 6th to 12th of May is M.E Awareness Week as well as the whole of May being International M.E Awareness Month with a M.E Awareness Day on the 12th of May.
- Did you know it affects 250,000 people in the UK including yours truly?
- It may be diagnosed as Chronic Fatigue Syndrome (CFS) or Post Viral Fatigue Syndrome (PVFS)
- M.E symptoms may include persistent exhaustion, muscle and/or joint pain, sleep disturbance, feeling flu-like and having problems with memory and concentration.
Well that’s the official bit from Action For Me but what is it like in real life everyday family life?
Well in a word its shit. (sorry Mum for swearing) When I first explained to the children I had M.E, I explained it in language they understood, mobile phone language. It’s like having only one bar of battery left where as everyone else have the full three bars. If a 3 bar person goes out for a walk they may dip down to 2 bars but they soon charge back to 3 bars and still have the 2 bars while they are recharging. As a 1 bar person going out for a walk puts you down to no bars. But you don’t have 2 bars to fall back on while you’re recharging like 3 bar people have. And we all know how useless a mobile phone is with no bars, it can’t do anything.
But you look normal; maybe look a bit tired but normal.
That’s one of the problems, yes we do look normal. We look like we could run a marathon, ok may be stretching the point a bit but yes we look like everyone else but inside we don’t feel normal. You know that feeling when you are coming down with flu, the bit when it aches all over and even brushing your hair is torture? Now imagine that feeling (and all the lemsip in the world won’t make it go away) and run a marathon so your legs are at that wobbly stage. So now you got the aches and the wobbles have a nap on a really bad mattress so that your neck, shoulders and back really hurts. Think were nearly getting there on how it feels. Oh lastly don’t sleep for at least a week so you’re so tired your punch drunk and can’t hold your concentration and as for memory …what was I saying?
And just to put it into proportion that can be an ok day and there are many people a lot worse than that. Everyone with M.E has varying degrees of that above, some have all those at one time, and some may have just some. But the difficult bit is that a doctor, that is a good doctor that understands, are still a bit foggy as to what is best to treat the symptoms. There is no magic pill to take it all away. It can take months if not years for an understanding doctor to work out what the best combination of pills and treatment is best for each patient.
Now to bring things into even more reality we have family life to live like everyone else. Jobs to do, food to buy, housework etc etc. One of the things people with M.E are encouraged to do is pacing. This is basically doing just a little bit that you can do, stopping to rest, then carrying on a bit more, resting etc. So a day of housework would be 15 minutes housework, rest, 15 minutes housework, rest …you get the picture and not mad rush around for several hours doing the housework and then sit down. But there is that thing called life and when you have two children the pacing thing can go completely out the window because we look normal to everyone else. If we had two legs permanently broken with 2 huge plaster casts people would understand we can’t do everything, they are constantly reminded with 2 huge plaster casts in their face, but not with M.E.
The last really shit thing about M.E for me is I get fed up with having it. There is no magic light at the end of the tunnel. It gets me down when I have to say no to something that I want to do or the kids want to do and trot out the usual sentence of “I can’t because I don’t have enough energy”.
With all this shit stuff (yes I know I have sworn 3 times, sorry x3)I am going to end on a positive note. Having M.E made me change my lifestyle. I went self employed to stop stress and to work around my bad days. I now do something I absolutely love with a passion (crafting). Life is slower paced; I am not rushing here there and everywhere. Life is slow and flexible because it has to be.
Well done-I feel exactly the same diagnosed 2 years ago not been asked to see anyone since 🙁 I struggle daily but I am a fighter who knows what tomorrow brings x
If you haven’t asked to see anyone yet I would urge you to. You might be in a area that has outstanding specialists and even if they helped you with one thing it would be worth it.
Oh they call it Fibromyalgia too. And there are other symptoms, like hating lots of noise, and not being able to have half a glass of wine without the mother of all hangovers. And then you feel like apologising for being a flake, when clearly to the outside world nothing is wrong with you. And you learn to slow down, and it gets a bit better, but then you get carried away with how great you are, how on top of things, and you over do it….. repeat till fade.
Thanks for letting me share my rant on here too. I hate being like this, and no-one but my family would ever know.
I get fed up with always being curled up with a blanket on the sofa. Can get away with it in the winter easier but middle of the day in so called spring, I must look odd. I can also really relate to the …slow down, gets better, carried away, over done it …..bit. That is so like me.
I just wanted to say hi. I’ve been diagnosed with ME for the last 8 years and have struggled daily with managing my life around it. Like you mine is stress triggered and so I try to regulate my life to avoid stress triggers, but being a mother of a three year old and a wife of a slightly odd-ball husband, stresses still find their way in.
I’m currently in bed recovering from some virus that ran through our house. The boys are back on their feet after just a few days, I’ve been floored for just over a week, now I’m mostly just weak and brain foggy. Didn’t help that I also sliced open the middle finger on my right hand last week too so this bought of “down time” has been even more frustrating then normal as I haven’t been able to do so much as pick up a knitting needle or embroidery thread so it’s been all tv to pass the time.
One of the other things that made me want to reply to your post was to say that I’m also a crafter, and want to dedicate my energy (other then with my family) to being a professnal weaver. This last week is proving endlessly frustrating, well actually it’s been a few weeks. Weaving is pretty energy intensive at times and so I was also in recovery mode from that before I got this bug. So I have this beautiful warp on the loom ready to weave into placemats and a gorgeous box of yarn just arrived a few days ago ready for my next planned project.
It’s endlessly frustrating and depressing to have dreams and do nothing but lay around in bed for weeks on end thinking about them and not being able to actually do anything.
Thanks for letting me rant, I needed the outlet with someone who gets it.
Cheers
Tracey.