Hi all I have just joined this community after diagnosing myself from an article I read. I have been dealing with this for two years. I have had so many blood tests done to find out exactly what was going on. This condition has made me so Depressed and everyday I live in fear of the next attack. Last one was in October. I broke down in tears in the hospital after the last blood test couldn't tell me what was wrong. I will be booking an appointment with my Gp to see a specialist. My life has changed completely. I don't make plans anymore, I have had to hire a help, I don't go out for more than two hours and never do the amount of work I used to do before. I have 3 kids and I know without them I would have taken my life because of it. I am bed bound when it starts and lasts for a month. I am sorry for the long post.
Hard to cope. : Hi all I have just... - Myalgic Encephalo...
Hard to cope.
Hi I’m so sorry, but know exactly how you feel, I have this for about 6 years and only diagnoses 2016 and still struggle so much and it’s so difficult to manage, with young children it must be so difficult for you, yes at times I feel it’s no life and so misunderstood and not much can be done only wait to see if they do more research into this horrible wasteful disease and all the time we getting older and life going by.
I know what you mean about plans I try not to make too many, I still work not as much though as my energy and weakness so bad and no strength.
All I can say is keep strong and hang in there, hopefully there will be answers soon from the medical profession.
A 🙏🏼🙏🏼
Thanks Angiejenz for your reply. I really appreciate it. I am struggling to cope. The nausea, palpitations, strong smells and sleeplessness makes everything unbearable. Trying to get people to understand is impossible. I am really scared about the future especially for my children. All I do is lay down and cry.
Hi jo19
Yes it’s absolutely awful and no person understands but you but please keeps strong I used to do some meditation before I was diagnosed I was literally going round the twist and though I was going mad. Anyhow these days I don’t tell many folk I’m unwell, all those comments you are just overdoing it I’m tired too snd all those comments that drive us further into depression.
How old are your children.?
Tuskegee care.
A x
My kids are 5,8and 11. So they are still young and can't take care of themselves. And you are so right about people saying we over do things. My closest friend really upset me telling me I keep allowing my kids friends come over to the house. They are not ages that I have to continually attend to. They just play in their rooms! I got so fed of being advised about something she knew nothing about. I take each day as it comes. I can't promise my children I will take them out because I don't know how I will feel when I wake up. Even to give them hugs seems so stressful. I already have sickle cell. So this just compounds my problems although it has made getting help from adult social services easier. I have someone who comes to help me regularly at home.
Hi jo19
Sorry for the late reply, vv difficult with young children thank goodness you have help, and I know you must feel terrible if your children want to do things and you are unable it’s so frustrating for you and missing out is so unbearable I guess it’s acceptance which is so hard I don’t thing I will ever accept it that’s why I still work and always crash, take care Hun.
A x
Angiejenz just wanted to say thank you for not ignoring my cry for help. You have really understand even better something I thought was just in my head. I knew something was not right. Thanks a million. 😀
Hi, wanted to send hugs too. It is hard, but I wanted to add a different perspective..I have young kids too, who have to help with running the house, and have done for the last two years, but I make it fun for them, and they earn rewards like sweets or extra time on the xbox for some of the longer jobs like hoovering. My eldest is now 13, and I chatted with him one day about it. However he genuinely says that he gets a lot out it of it as he feels like he is helping 'the team', and it makes him feel grownup, which he loves. Don't get me wrong, they still have most of the time to play and 'be kids' but doing little jobs is a massive help to me, doesn't take them long, and they just do it as second nature now. Xxx
Hi Kazandoz, thanks for taking the time to make me feel better and give some advice. I do tell my children to help but I will say not as much as I should. My biggest problem is that I am a perfectionist so it makes it difficult to watch things been done including my husband. I was always tiding the house, cooking and cleaning. But I am become this person. I don't want when my kids grow, their memories of me will be me just lying in bed not able to get up. It bothers me. I glad you have worked out something with your kids. They sound delightful. Sorry my reply is long. Thanks for the hugs xxx.
I have some sort of idea about how you feel, as I too am/was a bit of a perfectionist. We are building our house too, so before this I was digging footings, bricklaying, plumbing, plastering...you get the idea :). Trying all the while to keep the existing house nice and clean :D!
I think a major part of this challenge becomes the need to adjust your perspective on life...Sometimes watching everyone run around me while I lay like a useless spud on the sofa kills me from the inside like a poisin, but other times I can tell myself that its great training for my kids, not only to be helping, but in teaching them to think of others. Focusing on the positives helps me get off that slippery slope of depressed thoughts. It does bother me that their memory of me will be like you were saying about you, but that just makes me feel sad, then stressed, and then more unwell, so when that beast raises its head, I sometimes have a quick cry and then lock it up again as fast as I can. I just accept now that it'll appear from time to time, and I am getting more practised at getting rid of it faster. I also have the lost the ability to speak for most of the time, so my poor family are now trained to react to whistles and clicks like our dogs :D!! You gotta see the funny side...it helps me through my darker days. Big (cozy in all this snow!) hugs! X
I understand you so well. I am a single mum, no support except the kind words of my mum who is 81 and in poor health. I used this support her but not any more. My boy is 8 and an only child and I can no longer even go out for a walk with him. I’m not working and just barker hanging on. Even washing up is a trial most days. I’m 51 and feel like I’m missing out on the rest my fchis chikdhood. I was active till last summer though feeling ill. But now everything has gradually stopped. The house is constantly a mess. And I struggle to even get to the shops. I’m tying myself in knots looking for help with private testing, nutrition, butvyou have to be your own doctor with this thing and it’s exhausting. I wish you all the best. At least your children have each other. That’s a positive.
So what if I do have ME?
Advice wanted - relatively new here
Club Bed
Call out for ME/immunologist private specialists 