Hi im zoe im 28 years old and have recently been diagnosed with CFS. It took nearly 10 years. I feel lost due to the fact i try to say im ok alot of the time when really im not i get sick of hearing myself say no im having a 'bad day' 'im not well' so i know what some people think oh here we go again.
Im just interested to know how you all go on.. i mean.. im feeling way iller than usual but i feel i cant go to doctors as they will say its your M.E. but what if it isnt? What if its something else. Im struggling one minute then i can have good couple of hours and if friends or family see me i look all fine then boom iv gone down again and i cant even be bothered to talk . Its so hard and frustrating would just like to know how others cope xx
I feel exactly like this Zoe.. in fact I could have wrote it myself. I have recently been diagnosed with ME and feel no one understands the full extent of the illness.. how debilitating it is.. and how misunderstood it is. J have gone from career girl.. fab social life.. looking after my Son and home on my own for years.. independent and 100mph girl to.... can't get up.. don't want to speak/see anyone.. no social life.. unable to maintain the job I love.. being passed from pillar to post with doctor/hospital appointment's. My friends have dwindled.. my teenage Son doesn't understand it... I spend day's in bed.. I get £13 a week not £2k a month... do I want this..no.. does it get any better? I understand exactly how you feel.. you're not alone xx
One thing that's helped me to cope is meditation. It's a very solid way to deal with anxiety, depression, and living with ME. Lately, what's also helped is connecting with others with this illness. Posting to this forum is one way to do this. Also, I recently attended a screening of UNREST, a movie about ME. The filmmaker was there to discuss her struggles with ME, and everyone in the audience had some connection to the illness. I highly recommend watching this film when it becomes more widely available. I think you'll be able to see it online. Also, I've been watching Youtube videos where other ME patients describe their illness.
Hi Zoe, you sound a lot like i feel. I feel guilty sometimes because i dont work and i ask myself if i really am that ill then i get really bad and realise i was being silly, of course i cant work. It is a natural feeling with this illness i guess. Many people with ME are working though and i dont know how they manage. I liked to keep fit before but know i am sat or led at home, well my parents because i had to give up my home. I am 40 years old and lost all my friends and living with my retired parents, seems pathetic at times.
I completely understand how you feel, Zoe. I was diagnosed with CFS at age 30 and have lived with it for 25 years now. I was lucky enough to have a supportive husband and my symptoms were mild enough that I was able to at least teach and work part time. I think the hardest part of this illness is that we appear to look fine or healthy when we actually feel so sick and tired. I've stopped telling people about it and find myself making up white lies about why I can't make it out or why I'm not feeling great.
I'm very selective about who I go out with and who I choose to spend my time with because it requires a lot of stored up energy before going out and lots of rest the days after.
On my good days, I try to stay as positive as possible. I try to exercise lightly by walking or jogging outdoors for about 20-30 minutes. I also take something to help me sleep because my sleep patterns are so messed up. I still have my good and bad periods, though. I just make the best out of the good days or good moments and try to appreciate the small things in life. Hope this helps. Good luck to you. KPD
Hi, im so glad i joined a forum at last as waking up to messages this morning off you people who DO understand is a very comforting feeling. I have a son whos 8 hes my rock. But its hard as a mum not being able to be an outgoing mum.
Im just stuck because sometimes family ask what is up why dont i feel well. And the answer is i actually dont know i just know my body is like jelly i dont want to talk my head is like a horrible cloud circling all way round the top and my eyes even hurt to blink at times with it .
Hope you are feeling better today a little xx
Hello jackie.
Im going to try and find that film when iv took my little one to school. Iv always been on google reading peoples stories of M.E which helps whilst im reading it but few hours later i just find myself in daydreams just wishing for just a whole week of feeling ok but been like this since birth of my son and i thought last night i need to actually speak to people who know how i feel . Not doctors not my therapist . Thanks for responding to my message. I think its also nice to rant to people who agree and know as im not silly some people genuinely listen and others think get a grip :-) x
Hey andy. By far how ur life is right now is not pathetic. You have a genuine illness the only downfall is its invisible alot until people say ohh you dont look well. NO s**t sherlock i tell you im not well most days :-)
Im currently working and for past 18 months i can get up feel ok ish i never feel 100% and be time iv done my 6 hour shift im left exhausted moody bodys like jelly heads thudding pain in my feet toes ankles you'll know all the awful stuff we have to put up with :-). Keep strong we have too
Aww its so nice reading peoples messages on here. It really helps. I so agree with telling white lies iv literally given up explaining how i feel and i know people think i look ok and think shes not ill and inside im hurting with something but hide things well. Iv noticed im getting slightly worse which is quite scary. I get worried incase it is something else and its not M.E but iv had every test anyone could name even down to cancer tests. I sat last night and thought iv no one to help me get better im 28 and i nearly got upset but i googled a forum and this one popped up . :-) hope you feel ok take care x
Does anyone know if i can download an app instead of coming on website :-)
Thanks for the reply, it just feels pathetic at times. You are working miracles by keeping a job and raising a child. I have total respect for you. Oh i found out that Morgan Freeman has ME as well and he has done allright for himself.
Well here I am again Zoe... 1.24am and awake for more painkillers. I have deteriorated so much in the past few weeks. I'm hardly up before 3pm and feel like wasting away waiting for referrals. My life has changed dramatically in the last 8 months and wish daily I was how I used to be. I am struggling to walk dress and do normal day to day activities people take for granted. It's hard to sort out money/bills when confined to bed and as I've worked 30 years full time don't know what I'm entitled to. I am getting £89.35 SSP from work bit that's paid monthly.. due 27th. £13.39 WTC a week just not even paying for food let alone bills. My commitment's were based on my £2k salary. Never felt as low in my life. The cutting remarks from your nearest and dearest don't help. "We all get tired" " Think I have that too" Have you tried going to bed earlier" or just don't contact you at all! I am usually such a positive person but hate how I feel right now! Sorry... don't mean to moan... having a moment lol... hope you are feeling okay today Jane x
Hi Jane, sorry to hear you are struggling. I just wanted to say that you have a serious illness and sound like you really should be getting government support. You are entitled to more than you know and sounds like you should apply for as much disability as you can. Not sure what country you are in but where i live in the UK it is a massive struggle to get the government to realise how ill i am. They say i should work and that i have to ignore the pain. Honestly this country is a joke if you have ME/Fibromyalgia. It has been a long hard struggle but i am waiting for a tribunal to get my descision changed and have had to seek the help of a charity to represent me at my tribunal. If you need any help or advice on getting what you are entitled to do not hesitate to ask and i will do my best.
Im struggling dont know how long i can last with work but i'll put up a good fight before i have to stop for a while. :-) dont ever feel pathetic as many people are suffering the same and only us who have the illness know exactly what its really like living day to day life. Keep going
Hiya jane. How are you feeling today. Im sorry to hear how bad things have got for you emotionally and financially. You should see what other help there is. Altho i havent as i know they'll take one look and think shes not ill. I hope and pray one day the goverment take us serious. Its such a battle every day .. id love to sit with the highest people and say you'v had the cold/flu right and you really thought i cant take this anymore wish it would go away and it did fully go away a week later well imagen it didnt go away and stayed a week a month a year 5 years 10 years imagen everyday something on ur body hurts nhs dont care in my opinion.
Sounds like you dont get much support ?
I think we all get told to 'get a grip shake yaself' 'go bed earlier ' 'eat better' blar blar :-)
Your not on your own take care x
Thank you so much for your reply Andy, I too am in the UK. Worked 30 years full time and never claimed benefits before, so had no idea where to start. Applied for PIP back in June and had the assessment beginning of August. 4 weeks later still not heard anything. I am currently getting £13 per week Working Tax Credit. Been off work since 11th August as too ill to get out of bed but the SSP of £89 a week won't be paid until 27th September. So £13 is all I have. Went to see a benefit adviser at the local job centre that didn't have a clue.. told me to ring contribution esa line. To be told this can't be paid when still working! Apparently Universal Credit came into force in this area in June but no one seems to know anything about it. So so frustrating on top of your illness. I give up! X
How you feeling today Zoe... hope you are feeling okay is and having a "good" day.. sending you good thoughts and well wishes.. take care Jane xx
Oh that is just useless Jane. Honestly these people have not got a clue. I have had to go on universal credit but was told that was a bad move as i was judged to be fit for work. My sister was an NHS employee for 11 years and she had to stop working and is going through the same situation as a lot of us. The government health assessments are a complete joke. I would advise you to try and get some legal advice by emailing or calling citizens advice. When i moved back to my parents i was able to use a local charity called SARQ i think they are caled but are only for residents of southampton. It is really important to get some sort of help, check for charities in your area. Obviously you have the issue of currently being employed so need to sort things out with them. I am far from an expert in this but experience is teaching me so if i can help i will try. I would also recomend keeping a health diary noting all your symptoms and amount of time in bed etc just so your doctor and whatever government idiots you come up against know how hard your life is. Over the coming years i intend to use what energy i have to raise awarness, i have gathered some peoples stories and i want to hammer home what people are going through so if you want to get in touch with me then email that goes for anyone reading this. strength in numbers. Take care.
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Morning jane.
Im not too bad. Bit dizzy and my heads so cloudy but iv got a busy day and working at tea time so i have to be ok :-)
How are you xxx
Hi Zoe,
I replied to your comment a few days ago and I tried to start a new discussion, but I haven't gotten any comments, so I hope you don't mind if I mention this here. Your discussion seems very active, so I'm hoping someone reads this and knows something about it.
Has anyone ever heard of using Low Dose Naltrexone (LDN) to treat Fibromyalgia and Chronic Fatigue Syndrome? It sounds very promising.
I was diagnosed with CFS in my early 30s and had learned how to manage my symptoms, but recently my symptoms have gotten worse, and I have more bad days than good ones.
The infectious disease doctor is treating me with doxycycline (an antibiotic) for 4 weeks to see if my symptoms improve.
While reading about the different treatments, I came across several articles about using Naltrexone to treat CFS. This drug is actually used to help people with addictions, but there have been some studies done in the treatment of CFS and Fibromyalgia. Hope someone knows something about this. I'm wondering if it is worth bringing up to my doctor next visit. If anyone has a chance, it is worth searching...I would love to hear your thoughts on this, since they seem more knowledgeable in the UK than in the US on CFS/ME.
Thanks in advance for any feedback. KPD