Your stories: drained, frustrated, guilty and isolated

In the latest round-up of the stories you’ve shared with Zonked Club, here are messages we’ve received from 10 people in recent days describing their own experiences and sharing the things they’ve learned along the way:

Gina

I have to say this is the best description ever put out there about how ME/CFS really is. I have been suffering for over 22 yrs and in the beginning was so ill and nobody could give me any answers, all tests came back normal so on paper I should have been fit as a fiddle but I had numerous horrible physical symptoms which in turn caused psychological problems. I wasn’t a depressive type of person but was just so fed up of feeling ill and not being able to get on with life. I felt so sick, sad, frustrated, guilty, useless, and a few times thoughts of what is the point of being here of being no use to anyone.

I don’t understand this illness and how you can look well but not feel it and one day you can do normal everyday things and even have a night out and no one would know there was anything wrong with you except that the following days you will just have to lay down and suffer the consequences and wait for your energy to come back and off you go again. I don’t speak a lot about my illness really as I can’t expect people to understand when I can’t understand myself.

Emma

Just wanted to say that your item on ME yesterday on BBC Radio 5 Live was so helpful as was your video diary which I will use to show family and friends who don’t get it! Within the first 5 minutes you described exactly how I feel: drained, frustrated, guilty and isolated. The lady interviewed, who said she spends her time being “well” also sums up where I’m at. It’s easier to say ‘I’m okay’ when asked. Maybe if I put a plaster on my head, people may take me more seriously… or not! Thanks again, I will follow your blog from now on.

Suzanne

So glad I found this. Diagnosed last year with ME/CFS. Really struggling to manage it and work. Tried applying for PIP for financial support but was rejected. My job is 0 hour contract so when I am unwell I do not get paid. I do however have regular shifts as a support worker but feel so frustrated that I have to force myself to go to work due to my financial insecurities.

Karen

Hi, my 12 year-old-daughter was diagnosed in Jan this year with post-viral fatigue syndrome after being very poorly since October. She has suffered from functional abdominal pain syndrome (FAPS) since 2011. If her fatigue etc. continue the diagnosis is likely to be changed to ME/CFS. I am hoping against all hope that this will not be the case but in the meantime I am trying to learn as much as possible about the condition and how others cope just in case.

I am sorry to read your story about how you feel each day. I had glandular fever 20 years ago but still remember the extreme debilitating fatigue that went with it and the memories of crawling into bed after a day at work and being unable to even talk by that point. At least this helps me understand a little of how my daughter is feeling. I am going to look through the website, hoping to find something to help, anything at all, even something small will be appreciated. Thank you, and hope you are having a good day today

Isla

Finally it happened. After hearing ITV News highlight this daily life sentence I cried and cried. For so long now I have been suffering with this and felt like the only one with it where I live. When I saw the news I just could not believe it! I now hope maybe a group will form where we can all meet up from time to time.

Lorraine

Came across your website today. Thank you so much for all your effort in making it so informative and interesting. I can relate to each blog 100%. I am now in my 7th year with ME and each day is a new challenge. I hope you do make a full recovery and wish you well. In the mean time please carry on with this excellent site.

Lily

I have just discovered your fantastic website and wanted to say hello! I have had chronic fatigue/ME since I was 13, which is 17 years ago. I had it badly for about 2 years and then have generally been able to lead a relatively normal life, however still with pacing and less energy then your average person, and more flus. Even with being better, I however still get relapses, and I am in one at the moment and off work. I have really enjoyed reading your posts and about your journey and so much of it rings true to me.

The three things that I have found the most helpful personally have been nutrition, vitamins and acupuncture. I would recommend them all! Thanks for creating this great website.

Lynsey

I watched your report on the news last night and it spoke volumes to me. I am 34 years old and have lived with CFS/ME for the last 10 years. I was diagnosed in 2007. I was then diagnosed with Rheumatoid Arthritis a year later. I was completely bed-ridden at the beginning but life now is management. I managed to keep up with full time employment for most of my illness however with a lot of absences. My health has got worse in the last two years which has made me take the difficult decision to leave my employment as I just couldn’t find the support from them that was required as like you say “they can’t see it” so they don’t understand how much ME effects your life let alone having RA on top of it.

Stuart

I was labelled CFS in the early 90s. I think it was and went through a lot of similar stuff, won’t go into it here for now. Not sure if you have tried getting vitamin B12 injections. I currently get an injection every 12 week of Hydroxocobalamin 1MG in 1ml. After about a year I noticed a big difference in my life and activity. At my low I couldn’t walk 100 metres and suffered shin splints weakness and tiredness but unable to sleep.

I now work a full time job and only get bad bouts every so often. The key is to learn your limits and stop before you go to far. Very hard to do. I can now do a lot more than I was able to do during my low period but not 100% active as I once was but then that might be age related!

Jo

I felt I needed to contact you after seeing you on the news yesterday. I’ve just read all your blogs on your website and can truly say I feel so much happier after reading them.

I was diagnosed with ME mid-October last year and have experienced a real rollercoaster since then. I have a husband, two young daughters and had a busy, demanding and stressful job and was very much constantly on the go juggling many many things and multi-tasking. My ‘old’ life crashed and is a distant memory now. My husband has been amazing yet it’s really difficult for other family members to really know and appreciate what I go through every single day as I look the same old me to the untrained eye. My husband however can tell at a glance exactly what I’m feeling. It seems it’s his super power that I didn’t know existed.

I’ve cried, got angry and felt overwhelming grief for my old life. Still do most days. The bad days are more than the good days at the moment. I feel guilty for not being the mom, wife and person I want to be. I’m not able to work at the moment. I’m barely able to exist doing the basics of life, what little energy I have, I use on my daughters but I will fight this battle. I may not win today or tomorrow but I will continue to try. Thank you for your blogs and vlogs Gary! Keep them coming. They make me feel normal again. That I’m not the only one feeling like I do.

Thanks all for sharing your experiences. I know from the messages I receive that they’re of great comfort to others. If you want to, you can get in touch here.

3 Comments

  1. Wow. Powerful stuff.

    Jo, we are where you are. my husband has had it since August. Young children and inability to work at the moment. Family and friends struggling to get it although Gary’s video has helped massively with that already. He’s having more bad days than good but determined to kick It’s ass. I’m here if you want to talk or Make contact. Facebook- GT Everson

    Like

  2. I have had this condition for over 25 years and only diagnosed a few years ago. Having my condition labelled helped me, in the way that I could research and try to do what I could to recover or help myself feel more normal. I found acupuncture helped, multivitamins, pacing and a high umf Manuka honey, as I believe that ME can be caused by a faulty immune system. Taking 3 teaspoons throughout each day of the Manuka honey has made me feel stronger within my self, and lowered the energy slumps drastically. It won’t happen straightaway it does take time. I am not cured however I can live more of a normal life. Don’t bother with active honey..that’s a waste of time you need UMF which is labatory tested and is from New Zealand and the bees have gone via tea trees which is the antibacterial magic lotion 🙂

    Liked by 1 person

  3. First of all many many thanks to Gary for bringing to the attention of the general public the plight of the ME community.
    I am a 76 year old female who has had ME for four and a half years. I was very active, horseriding, badminton, walking and enjoying life to the full. Because I was an active person I have found it very difficult to “pace” myself and am at present in another “crash” .
    I am so pleased to have found this website as I can identify with Gary and every person who has left their messages on this site. It is such a relief to feel that you are not alone and that others are going through the same daily struggles. It is hard to keep the smile on your face but we must all send positive thoughts to each other and hope to goodness that somewhere there is someone who is going to find a solution that is going to help us all.
    Gary, hope your wedding day is fabulous and that you have many happy years to come.

    Liked by 1 person

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