fragmented.ME …
mind * body * soul ...

my top TEN impacts of ME …

Having ME has changed my life beyond all recognition. So I wanted to document for you the top impacts it has had on me.

When I started to write them down, I found there are many more ways than ten that ME has impacted my life so I clumped categories together to cover as many as I could in one go. But there will probably more additions to this area of how ME impacts me.

This is my personal list and yours might well be very different. I’d love to hear yours and you can send them to me in the ‘can you help us do better’ form at the end of the blog. I may do a ‘your top TEN impacts of ME …’ blog if there are enough responses with similar, but different to mine, responses …

   … my top TEN impacts of ME …   

These are not really in any particular order. I wanted them to be but I realised that the loss of any one of them is equally devastating in its own right. So it became impossible for me to order them in terms of impact. Nevertheless, I have tried my best to prioritise them. That said, they really do all impact on an almost equal level.

#1: loss of ability to do … 

The impact of losing my ability to do stuff is nothing short of devastation. ME has taken away my freedom to do and to plan when and what I do. Because I never know how I will feel. Actually I do loosely know how I will feel, it will be terrible but some days I feel like I’m dying and on other days I no longer feel like I’m dying, I simply feel very sick. Either way, this impacts on my ability to do anything, which is closely tied up with every single impact mentioned below. From being mildly sick, when I had to really plan and cancel those plans often, to now being severely sick where I can’t even have the guarantee that I will make a necessary medical appointment, which is extremely difficult. It makes me sad and frustrated that medical people don’t get this and how it impacts on me & ME.  So many times I have been discharged for missing appointments. However, the newly proposed NICE guidelines for ME/CFS cover this aspect of care and hopefully medical teams will take them onboard.

#2: the nature of ME … 

The impact owing to the nature of ME is huge. Firstly, ME is an extremely controversial condition. Although, the WHO and NICE class it as a serious neurological condition, there are still many GPs, and lay people, who don’t believe in it. As well, there are no specialised treatments for it. It is poorly understood and poorly recognised. Yet, the impact it has on actual life is devastating. On a personal note, I don’t think those close to me realised the impact it was having on me until I became severe, which was way too little way too late. Importantly, for some of us, it’s what we do when we are mild or moderate that determines if we go on to the severe end. I truly believe, had I been believed and heard, by my medical team and those close to me, when I was mild, and been allowed, or even encouraged, to stop instead of being criticised for not doing enough, well I truly believe, had this happened for me, I would never have become severe. I could have kept the meagre life I had instead of exchanging it for no life at all, and feeling like a burden.

#3: personal care … 

The impact of not been able to care for myself the way I would like to makes me feel extremely low. At one time, I would get up and have a shower, not necessarily wash my hair but definitely ‘do’ my hair, put on clean clothes and enjoy the feeling of a clean body and clean fresh clothes, every single day. Yet, what I would do automatically, without any thought, every single day now feels miraculous. Because, now I have to factor in that some days I cannot even brush my teeth twice a day. And being personally clean usually gets done when I can no longer stand the smell of myself … Fortunately for me, and you could say others too, I have a very sensitive sense of smell, so I tend to smell myself before anyone else can. Looking at personal care in these terms highlights that getting dressed doesn’t even factor into it. I live in my PJs …

#4: more personal care … 

This follows on from the impact of not being able to care for myself the way I would like to. Because taking care of yourself is more than just personal care. It involves getting dressed, choosing and shopping for those clothes we wear. My clothes have definitely gone down a path of evolution, which you can read a little about on my ‘me Me & clothes …’ blog page. Then, there is the hair. I’ve not been to the hairdressers in years. I cut my hair myself and I’m not a hairdresser. I don’t style it any more, I just don’t have the energy to use on this. I simply wash it, sometimes I don’t even comb it, and I put it in a bun or pony tail. And only wash my face when I bathe and I never wear makeup. The makeup part isn’t an issue for me but if you read the ‘me Me & clothes …‘ blog page, mentioned above, you will see that not wearing jewellery anymore is a biggie for me, it’s like going out without lipstick for some.

#5: needing pain medications … 

The impact of needing, and possibly taking too many pain medications, is that, firstly, they definitely damage your stomach and liver as well as the rest of your body because they are toxic. Secondly, and quite seriously too, it is very easy to accidentally overdose when you take pain medications daily as they build up inside you. One if the most insidious pain medications, for doing this, is paracetamol. And on a personal note, for me, I honestly believe that I’ve damaged my liver. I now have NAFLD. I’d rather not have to take pain medications, but without them I wouldn’t even be able to get out of bed. So they have become a necessary part of my life. I use an app to log when I take them because it is extremely easy to take more than the safe eight paracetamol in any one 24 hour period. Which can cause liver damage and also quickly turn into an accidental overdose.

#6: not being able to work … 

The impact of not being able to work is purely and simply poverty. Not having an income, and not being entitle to benefits, means I have no money of my own whatsoever. Also, if you aren’t classed as poor because your partner earns enough for two, as is my case, then you can never ever be an equal partner. This will have devastating effects on your self-esteem and how you, and possibly others too, value your life. I am always seen as the financial, and in many other ways too, burden. Whereas, people feel sorry for my husband having to be married to me, the sick and disabled half.

FFS 🤦🏻‍♀️ as if being this ill alone isn’t enough to have to deal with!

#7: having, or ‘getting’ as some would like to see it, to stay home … 

The impact of having, or ‘getting’, to stay home is one of the worse. Massively impacting, because people actually think we are lucky to get to stay home, or not have to work, whatever it means to them. Yet, the reality of being stuck at home, all day, usually alone, is massive. It’s isolating. It’s not what it’s cracked up to be. Plus, those who view it as a positive forget the part where you are too sick to go to the bathroom let alone leave the house, to maybe go for a walk, or shop, or do whatever it is they imagine you get to do when you’re home all day long, day after day, month after month, year after year.

#8: not having energy … 

The impact of not having energy to do what you want to do can be soul destroying. But it can also have more devastating impacts. For instance just not having the energy to get a drink when you want one, to eat when you need too and worse still not being able to go to the loo when you need to do. Energy is the currency of everything and if you don’t have energy you can’t do. Simple. No energy means no life! Take the time to stop and think what this actually means in real terms. Imagine, not being able to do … [think about all the simple but necessary things you do for yourself before you even start on the other stuff – it’s massive]

#9: shopping … 

The impact of not being able to shop anymore. That means, food shopping as well as leisure shopping. My husband does all the food shopping and during lockdown we couldn’t get access to deliveries so each time he left the house to food shop he came home potentially putting me in danger of catching coronavirus. As you may know from a previous post I have not taken up the opportunity of vaccination, you can read it on my ‘reflections & ramblings …’ blog, of 27th March, 2021. And please, no judgements … it’s my personal choice. However, this means that each trip he has out puts me in danger.

#10: loosing people … 

The impact of losing people compounds the overall loss which can be unbearable. You will lose family. You will lose friends. You will lose partners. And possibly even your children will disown you, or you may be forced into the decision of not having children. This loss happens, simply because you can never be consistently there sharing with them the things they want you to share in. You will cancel so many plans that some will begin to forget you and leave you out of their next plans. And so, if you are lucky enough to have people, or even just that single someone, or online friends, who has stuck around, then value them. They are very very special.

in summary & in conclusion …

This is my personal list and yours might well be very different. I’d love to hear yours and you can send them to me in the ‘can you help us do better’ form at the end of the blog.

Therefore, now that I have come to the end of my list, I have decided that I will do a ‘your top TEN impacts of ME …’ blog and compare the popular, but different to mine, responses …

 fragmented.ME xXx

My birth name is Denise, but I’m know as Bella to those who love me. I have a first class honours degree in education & psychology and a strong passion to keep learning and educating others ... I have severe ME/CFS and lots of other chronic illnesses and I started this blog as an expansion to my instagram page, where I advocate for chronic illness. I am married and have two grown up boys, or should I say young men. I have three gorgeous grandchildren, one boy and two girls. And despite being chronically sick and housebound I am mostly happy. 🥰