I recently asked on social media if anyone wanted to ask me anything relating to my illness. Thank you to those of you who asked questions & thank you also to everyone reading this. Here goes.....
What is M.E?
M.E is a very debilitating physical condition that causes various symptoms including severe fatigue, muscle pain & weakness, heightened sensitivity to senses (mine is smell!), problems with memory & concentration & sleep problems. They are just a few of a long list of symptoms & not all sufferers experience the same ones. There is a large scale of severity with M.E. Some people are mildy affected & can still function normally to some extent whereas others are very severely affected & completely bedbound requiring help with everything. I am fairly severely affected, which people who don't know me may be surprised at as I appear to look ok. That is the problem with invisible illness, sufferers often don't look unwell.
There are a lot of misconceptions towards what M.E is due to the lack of understanding towards it I think. It used to be known as Yuppie Flu & people often think it's "that thing where you're tired all the time". It is so much more than just being tired. I did a post previously about what M.E is which explains in more detail -
link here
What's going on in your body to cause the symptoms?
I am not really sure what's going on in my body anymore!! What I do know is that I constantly feel rubbish. An easy way to describe how I am is to compare my body to an almost empty battery. I am constantly running on very low energy & if I don't try to recharge a tiny bit by having short rests I burn out. The exhaustion I experience is totally out of proportion to whatever activity is undertaken.
When you have M.E your body doesn't play ball & I feel like mine has totally let me down. If I try to walk more than I am able for example, I end up with severe pain & fatigue which comes on very quickly. It's like my body is saying OI STOP!
Our immune systems don't work very well either so we are prone to picking bugs & things up more easily which then take longer to go away & totally wipe us out.
Had I heard of the illness before I was diagnosed & what was my perception of it?
No, the first time I heard of it was when my GP said he thought that's what it was. He didn't explain it, he may have given me a leaflet but it is pretty much a blur. I had been forwards & backwards to the doctors over several months so I was finally given a reason for feeling so poorly but I didn't understand it at all.
My mum printed some stuff off the internet for me & I was basically left to find out what it was for myself. I discovered by the stuff online that there was an M.E clinic local to me so I asked for a referral! And it was there I received formal diagnosis in March 2003.
How has having the illness changed me other than symptoms (i.e am I more patient now, do I appreciate small things more)?
Its has changed me in lots of ways I think. At first I used to get very angry at stuff & it took me a long long time to accept that this was me now. Over time I have learnt to adjust & although there isn't a lot of positive stuff that comes with chronic illness, it makes you look at things differently. You definitely appreciate the small things more & I don't take stuff for granted now like I used to. When all the every day things you did without thinking about before get taken away from you, it changes your whole outlook. Who would ever think that walking down their street would be something they couldn't do? Certainly not me.
When you become ill your world becomes a lot smaller so the little things that other people probably don't find important become really major to us. I really appreciate people & the ones who take time to think of me. Small gestures mean so much. Knowing people care means the world. I have also met some amazing people through being poorly who I class as some of my closest friends.. other sufferers understand how it is & despite being poorly they are some of the kindest, most generous people I have known.
What's the best piece of advice for someone newly diagnosed?
Listen to your body. I didn't & I very stupidly pushed myself to keep going. I was a 20-something "normal" girl with a good job & a good social life. I didn't want it to affect my job or it stop me from doing the things I enjoyed. I used to come in from work as a lawyer, sleep a few hours then make myself go to the gym. I remember how I used to tell myself to stop being so pathetic & wonder why I was yawning so much on the cross trainer! I learnt the hard way though & after not even a year I ended up pretty much collapsing & my body totally crashed. It had given up & I regret pushing myself so much now.
What can friends & family do? What should they not do?
It is very difficult for people close to you as they see the person they care about suffering & can't do anything to take it away. The most important thing to do is just be there whenever needed. Whether it is to be a shoulder to cry on (as there is a lot of crying!), whether it is to just listen when we need to get stuff off our chests (there is sometimes a lot of shouting!), whether it is to try to make us see things in a different way as our thoughts can spiral rapidly when we are in a crash..we sometimes need someone to be our sensible head. Helping to get food or drink if we are unable to & other little things to save our energy. Sometimes just a hug will do when you don't know what to say.
When someone is having a particularly bad time, things like a card to let them know you are thinking of them is lovely. Or chocolate always goes down well! We really don't enjoy feeling so poorly so even getting a nice text message can make all the difference.
Things not to do is say stuff like "snap out of it" or "just stop being so lazy" or "I'm sick of hearing about you feeling poorly" or "I'm sick of you being poorly"!! Having your illness thrown at you isn't nice.
Another thing we (I) don't like but people always think they are helping is to say that their neighbour's auntie's friend's sister had M.E & is now better (as a result of some so called miracle cure)! There are no proven medical cures so as nice as it is we unfortunately have heard it all before & if we don't say much in response then that's why!
What do you do to prevent other illnesses from affecting you because of M.E, such as depression?
I think it is very difficult to become (chronically) physically ill & it not affect you mentally. When I first got diagnosed & kept pushing myself I was in denial I think. When I eventually crashed I became housebound (& pretty much bedbound) for a year. My doctor had been telling me for a while that I was showing signs of depression but the whole stigma attached to mental illness & anti-depressants made me fight against it & I was adamant I was fine. I wasn't fine though & eventually broke down in front of my GP. I started on tablets despite my worry about them but I soon felt like me again & wondered why I had been so against it. I came off them after a year or so when I started getting my head around being poorly & having to change the way I lived.
However once my daughter was born & my condition took a turn for the worse I didn't realise I was suffering again. I was diagnosed with post natal depression & started back on tablets but I think it is virtually impossible to avoid it when your life is so severely affected by illness. Depression isn't just feeling "depressed" & it may not even make you feel like that. It can affect you in so many ways for example making you really short tempered, disturbing your sleep so you wake up in the middle of the night but can't get back to sleep, giving you major loss of appetite. All the symptoms were there but I didn't realise until months later when I spoke to my doctor about something else & happened to mention it.
People tell me now I am always happy & radiate positive energy.. not sure I agree & they don't see me miserable & moaning ;-) But I do try to stay positive & I think I use humour a lot to cover up the crap. I find I laugh a lot now, it helps having equally crazy friends!! There's nothing much else that makes you feel the way proper belly laughing does!
What medications do you take for pain & sleep?
There are various meds we can take to try to help alleviate pain but there is nothing we can take to cure M.E unfortunately. My pain has been a lot worse over the last few years & I may also have another condition called fibromyalgia which a lot people with M.E seem to get too. Something I use a lot is an electric heat pad. It is really good for aches & I have it on a lot! I have regular osteopathy sessions too which helps with alleviating the pain for a while.
I take muscle relaxants at night as & when I need them, usually when I am feeling particularly achey as they help with the pain the next day. I have a few different painkillers for when my pain is bad. I am prescribed a high strength of co-codamol which used to make me feel woozy but I am too used to it now so it doesn't affect me much! I also have sleeping pills as my sleep is so bad. I never had sleep problems until I started with M.E. Insomnia is evil!
How do you explain M.E in a child friendly way?
For my daughter me being poorly is all she's ever known. She is 5 & a half now & understands that "mummy has M.E & doesn't have much energy". She knows I get really tired & my legs hurt so I need to use a wheelchair. It's how things are for us & she just gets it.
Some people with children try to hide their condition from them, or the severity of it, but for me that was never an option. I think if you explain when they are old enough to understand, even in basic terms, that you are poorly & can't do X Y or Z it gives them a better understanding of why you might not be able to do the same sort of things they see other mummys or daddys do. I don't think complicated explanations are needed but if they grasp some sort of understanding then it is a good thing.
How was it when your daughter was a baby? How did you cope then?
It was very tough. I didn't expect to become so much more poorly so quickly as I had been at the same sort of manageable level for a while. I relapsed very quickly after having her & was unable to get through a day without having to ring my husband to come home from work early, which wasn't exactly ideal. I used to try to manage but by about 4pm the fatigue was too much to cope with & I would feel like I was going to collapse. It wasn't just the usual tiredness everyone with a baby gets. It is so difficult to explain but I needed my baby to be safe & I didn't feel with the way I was that she would be.
After a while my husband had to get signed off work to help look after us both & we then got support from the doctors in getting care put in place to support me. Carers started when my daughter was 6 months old & having someone there to help with stuff I didn't have the energy for made all the difference. Knowing I could go & lie down to recharge a bit while my baby was safe helped loads. Family helped whenever possible too. I felt useless but soon came to realise that I was just doing the best I could as a mummy with M.E.
How do I manage mummying & being ill?
It is a lot easier now in respect of her being old enough to play without having to constantly be with her. She has always been very independent since being tiny anyway! We have to do things differently to other mums & as I have mentioned recently in another post we do a lot of craft stuff or play games at home as I am not upto going out lots. She knows I have to rest a fair bit & will happily chill out with me & watch something on tv while I shut my eyes.
On weekends if we don't have anything planned (or if she doesn't have a play date or a party!) her dad will take her out so she can burn off some energy which she has loads of! Or family if they are around when he is working. She is quite happy being in the house but I don't like her to be stuck in because of me so if someone can take her out even if just for a bit then it helps. The rest of the time she is happy playing with toys or sitting drawing or colouring in & I'm sure my non existent artistic skills have improved loads as a result!! I experience a fair bit of mummy guilt about not being able to do certain stuff but try not to beat myself up about it too much.
What does my future hold in terms of ever feeling better?
Honestly I don't know. Chances are because I've had it so long even if I was to improve it will always be there. It is difficult thinking about the future when trying to manage the here & now. Some days just the thought of getting through the day when plagued by horrible symptoms is daunting enough.
I would love to say one day I will be free from this horrible illness & able to work, or live what I perceive as a normal life, but I just dont know.
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Thank you so much for reading & if anyone has any other questions feel free to ask.
ME Mummy A xx
