M.E. - is this a lost cause?
Posted , 8 users are following.
Sorry for the little rant here, but does anyone else ever feel this is a very lonely condition? I feel like when you do eventually speak to people you know, they claim to care yet never ask how things are going or offer to help in any way. I feel strongly that people in our situation are let down by the lack of funding into the cause and treatment of this condition and a couple of times have set up a just giving page to try and raise funds for the M.E. Association and not one of my friends or family has ever donated. I've tried again with m.e. Awareness week coming up 6th - 12th May but not joy yet!
Thanks for listening x
0 likes, 18 replies
t92012 Tutu123
Posted
It does feel like a lost cause sometimes. For me, family just offer unsolicited advice like "go for walk and get some sun and you'll feel better" or "you need to exercise to build yourself up" which can be very exhausting to have to deal with as I have enough to worry about. I think the main issue is that it isn't a very well known illness, or even believed sometimes, even by actual doctors. People have a hard time with it because you can look okay but feel like you're dying inside. They couldn't possibly understand what it feels like because exhaustion to them is just tiredness at the end of a normal day, most people won't have ever experienced the type of exhaustion or suffering we experience daily and as a response to doing such basic tasks. And because there's no cure and no treatment, it's very easy for people to just not take it seriously or not think it's real because if it were real surely the doctors would be helping us, right? I WISH.
I think regular healthy people just get annoyed when you don't get better, honestly. They may offer help or ask you how you are from time to time, but more often than not, it's out of habit or to be nice in the moment, following through is a different story. As soon as they realise your health isn't improving, they get pretty bored with it, like it was a novelty to them, something they don't need to deal with but were just entertaining for a while. Sometimes thats okay, because everyone should practice self care and it can be overwhelming to the people around us too, but most of the time it's just because they see we aren't getting better and don't care to stick around. It sucks, but it's true.
There is a lack of funding, for sure, but mostly it's just lack of awareness. That's the root of it all, because with more awareness there would be more funding, more compassion, understanding, and so on... people also lack motivation to seek out what the illness is. If they're not going through it or don't know someone going through it, it's difficult for them to care, I guess? I think it's a constant struggle with M.E, to be and feel seen and heard. It's lonely and isolating, especially when no one around you can understand it. The only thing there is to hold onto in a situation like this is hope. Hope for new treatment, for cures, or just hope to improving, even if it's by 5%. But believe me when I say, I totally understand what you're feeling and I feel it too. It's the hardest and most soul crushing thing to have to go through.
Tutu123 t92012
Posted
Thank you for taking the time to reply. You put it so well. This afternoon my husband tried to comfort me and said what you said that because people can't see the illness and have no understanding of what it feels like, it's difficult for them to care. Conditions such as cancer for example, seem to affect everyone in some way and it's very obvious usually when people are ill with other diseases. I guess that's why there is better funding, awareness and research for those sorts of conditions. Yes it certainly doesn't help either when the medical profession are disinterested or don't believe people either. I agree I always have hope that I may improve a little. That's what I'm aiming for now just to get a little better. I had acupuncture recently which helped my pain a little. It was good to try something that gave a good result. I do struggle so much with the fatigue. I find it really hard to come to terms with. It's like you almost have to go through the grieving process for your previous life/health and accept that you probably won't be able to achieve all of your dreams. Thanks again for replying. It's really nice to know that I'm not alone. And I'm very sorry that you too are suffering this horrible condition. Take care x
t92012 Tutu123
Posted
I agree. Cancer is so widespread, almost everyone has either had it or knows someone who has had it. In comparison though, our quality of life is similar and often worse, depending on what stage they're at, so it's sad that we have to suffer so much and have it not really be recognised. I think there is better funding for cancer because like you said, it's so prevelant nowadays, but also because it's something that you can see on a scan or can diagnose with simple tests. It's easy to disregard it if it can't be seen and often doctors don't want to dig deeper.
I'm glad you have found something that helps a little. I struggle the most with fatigue too, it's overwhelming to the point of being majority of the time housebound which is depressing in itself regardless of all the daily symptoms. Having a chronic illness, especially one that you can't treat, I feel is a constant grieving process. Just when you get to grips with one thing, something else changes - you get worse or something happens, and you grieve again.
I'm not sure your age, but I'm 26 and that makes me feel even worse about it. I feel like I haven't really lived yet and now I probably never will. I miss the life I could have had more than the one I did have, if that makes sense? I constantly have to try to come to terms with that, but I'm not sure if I ever will. All those dreams you have as a kid get long lost amidst the suffering, it's so sad. I feel like M.E is like being in stasis, and watching the world pass you by through your window, wishing so deeply that you could be a part of it, but always looking in from the outside. It's very lonely.
But hope. I try to hold onto it. I hope you can too! You're definitely not alone, even though it so often may feel like it. Something that helps me is to follow social media accounts (on instagram, for example) of people with the same condition, going through the same thing. It's a little thing, but it helps a bit. It's not the same as "real life" support, but it's something. I also saw this documentary called "Unrest" which was very validating to my experiences with M.E.
Hope some of this helped, and I wish you the best x
Tutu123 t92012
Posted
I completely relate to everything you're saying! I'm 30 and have been ill since I was 18 so don't really know what it's like to be a healthy adult. Sometimes I look out the window and wish I was out and about. I've forced myself to keep working full time,though I am lucky I have a supportive employer where I can work from home 3 days a week and pretty much work the shifts I want which is great. I do feel that weekends are wasted sleeping. I might arrange to see friends but have to make sure I do literally nothing for the entire day leading up to this just so I can stay awake. Its hard work. Even harder to know how determined we are to get better but how powerless we are to be able to make that happen. It is grief for sure. Watching older people going on runs and bike rides or just easily living life is the worst! I feel about 80 right now! Yes I also follow various social media accounts. I also have underactive thyroid so there are a number of different places I follow online to speak to others suffering. It never ceases to amaze me how little support we get. My doctor desperately wants to help me but he just doesn't know how. Unrest - is that the documentary on Netflix? I vaguely remember watching something on there about someone with m.e. Being bed bound which was very hard to watch.
Yes speaking with you has really helped. Thank you. X I hope that they find a cure in the future so we can all live the lives we wish to live x
Beverley_01 Tutu123
Posted
I think it is hard for people who don't have the condition to empathise with those who have. The downside is we, as those with it, don't have the energy to educate them most of the time.
I think it is worth remembering that many of us were healthy before cfs/me and would we have fully understood how soul destroying this condition can be back then? I know I didn't.
I also think if you are not bed bound or in a wheelchair, you don't look "ill" to people. That is a societal issue which needs challenging for many conditions-not just cfs/me.
It is isolating , challenging and frustrating to live with this condition. It is cruelly life changing. but, let us not give up hope. We have to advocate for ourselves and point to research and information when others don't understand. save web addresses that describe the condition and forward them on , when we can. Also the ME association offers leaflets as well as the NHS specialist cfs/me service which could help.
Beverley
Tutu123 Beverley_01
Posted
Hi Beverley,
Thanks for replying x yes I agree I don't think i would have understood this condition unless I had been through it myself. I do feel that when my friends have gone through illness or hard times I have tried to be there for them the best I can and asked them regularly how they are getting on and. Offering my support. But I feel I don't really get this back very often. But I do understand why. There's nothing others can do to help so maybe that's why they have stopped asking. I told my colleagues that sometimes I use a wheelchair and they just couldn't believe it as they had always seen me looking "well". Yes I do share information online and with my work when I've had to explain my condition to them. It is tough though. Hope you are well xx
Beverley_01 Tutu123
Edited
Hi,
totally did not compute that you had replied! Hope things are ok with you? It is a tough time at present as my youngest is just about to sit her GCSES and she's on the autistic spectrum which is another thing to negotiate! It means I just feel more wasted than usual and am just ploughing through until we are at the end of the tunnel. It is hardwork trying to be available when you are running on empty 😮
Yeah, no one quite sees me with a wheel chair either, I never realised how much people rely on visual cues to make assumptions that you must or must not be well when you're not doing well at all. Maybe they have to actually see you in the wheel chair?
My sleep is out the window at the moment not sure why so maybe I look more like I feel?
Beverley
Tutu123 Beverley_01
Posted
Hi Beverley
Yes that does sound like a very stressful time! We have so much planned this weekend with different people and I'm struggling not to just go and have a nap! ! The wheelchair thing is difficult as I would only hire one out if I was due to walk a long way or having a particularly bad day so I don't often use one and part of me feels I shouldn't have to just to get people to understand if you see what I mean! ? I guess I just have to focus on spending time with people who care and at least try to understand
Beverley_01 Tutu123
Posted
Hi again,
Yes, it can be pretty stressful. I am doing "keep calm and carry on" and she's doing really well. We hand in her Art portfolio on Tuesday and that is one GCSE done. Then a drama exam in 2 weeks and then that is done. It has been quite a journey! It will all be done in 6 weeks and she has been accepted on her course at college dependent on only 4 GCSEs. She is hopefully taking 6. We shall see on the day if this happens.
I never even thought to rent one out! I got mine through the NHS. I went to my doctor and asked about borrowing one but they gave my details to a company that works for the nhs and they delivered it to me. I have one that has to be pushed by someone else as I figured if I am too ill to walk, I am too ill to push myself too!
Totally understand what you mean about not having to use a wheelchair just to get people to understand. I have stopped caring to a degree as my walking is worse right now. I also keep being really cold even though it has been sunny so I keep wearing a winter hat 😃
I hope your busy weekend doesn't take all of your energy. Today is an in day for me and I have already had a nap. I had one yesterday as well. Maybe this is my new cycle? !
Hope your bank holiday weekend isn't too tiring and you get some respite from the busyness too.
Beverley
peter01729 Tutu123
Posted
I find it annoying when people say, "you look well", when in fact I am feeling so bad that if they suddenly felt this way, they would be calling an ambulance.
I think this is a reason they lack empathy, they think you must be making it up, and they love to believe "professionals" and cling onto their, "its anxiety" fob off.
Tutu123 peter01729
Posted
Hi Peter I know this feeling well!! When I've been at complete breaking point family members have said this is the best you've ever looked!! So frustrating! You don't want to have to try and make yourself LOOK bad just to be believed. But yes doctors love to tell you it's all in your head!
lori93950 Tutu123
Posted
i have ebv mono 1 year now . friends have 'gone missing' spend most of the day in bed 'resting' .
yes its a lonely illness i go days without seeing anybody as live alone .
you cant socialize as makes you relapse and doing any chores has to be split up over time . its no life .
Tutu123 lori93950
Posted
Hi Lori I'm so sorry to hear that. I can relate it feels so lonely. X I feel completely useless when I cant do the simplest of tasks that healthy people take for granted. I find this forum is great to speak to people and get things off your chest if nothing else. X take care
AndyC77 Tutu123
Posted
It is a very lonely illness. I always thought i had a lot of friends until i became ill, not a single one of the visited me and now i don't have any friends. Lucky i have family and as 5 of us in our family have ME there is a very good understanding from all my family members. I moved back into my parents 2 years ago but when i lived alone, it was 2 years of mostly me and nobody else. Lucky i like my own company.
Tutu123 AndyC77
Posted
I'm sorry to hear that Andy. I know how you feel I've lost a lot of friends as a result of this illness. It's difficult to socialise and others tend to lose interest as they don't understand the condition. It's good that you do have family that understand as that is very rare x
AndyC77 Tutu123
Posted
Thank you for the message, i hope you have enough of a support group around you.
lori93950 AndyC77
Posted
sometimes is better just going through this alone ... even talking exhausts me .my ex helps out with some errands but when youre talking to friends and family its the same old story . how many times can you say .... having a bad day ... no better ... feel awful . all they say is go to drs .. and we know they cant help us.
Tutu123 AndyC77
Posted
Thanks Andy, there's a couple of people who care and I know some people don't have anyone to support them so I count myself lucky x take care