Just need people who understand me to see how they cope living with CFS

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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

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  • Posted

    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

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    • Posted

      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

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  • Posted

    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. 

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    • Posted

      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

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  • Posted

    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.
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    • Posted

      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

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    • Posted

      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.
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    • Posted

      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 

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    • Posted

      Zoe - Are you still working now? I'm a single mother of a 12-year-old and I about to start my 6th week off of work. I worked way too long and it probably made me worse by putting myself through so much. I thought I'd be getting better, but I'm not at all. Now that I'm off, it sounds horrifying to go back to work and put myself through that again.

      I'm actually really scared because I don't know if disability will cover this. I'm having a hard time finding doctors that understand, let alone a judge.

      I'm just checking in to see how you are doing.

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    • Posted

      Morning hun. 

      I had chance to go on sick for few weeks but iv not took it i want to carry on while i can even tho im struggling . 

      Iv got a 9 year myself so i no how you feel . I feel guilty threw not being like other mums outgoing and stuff but nothing i can do :-) 

      I didnt even try for disability as i know its extremely hard to get it and i know they would look at me and think 'your not poorly' xx how are you today

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  • Posted

    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

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    • Posted

      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
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    • Posted

      Hiya,

      I'm brand new to this forum. I was diagnosed with CFS/ME a few weeks ago but now realise I've been suffering with it for about 8 years.

      I really identified with a lot of things in your post. I'm 31 and also have to be really selective about who I spend time with because of the energy output involved. I have a long term partner and we've recently been talking about getting married. I see you mentioned you have a husband- do you mind me asking how you managed a wedding alongside ME? To be honest the idea of a wedding, even a small simple one, fills me with stress and anxiety, but I really want to be married. Unfortunately we can't just go abroad on our own as he wants his mum & friends to be there.

      Anyway, if anyone has any thoughts about this, I'd be really grateful.

      Thanks xx

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    • Posted

      Hi Arlee,

      I was already married when I was diagnosed with CFS/ME, so I was lucky that I didn't have to go through the stress of planning a big wedding. I did manage to give birth to a little girl at age 35. My symptoms during pregnancy got worse, but I think they were better for many years while she was young.

      My point it that if you can manage a pregnancy, you can probably manage a wedding, but I would keep it as small as possible and only have 1 or 2 events. This is assuming that you are functioning pretty well and have learned to manage your symptoms. Do you have a mild case of CFS? I'm sure your partner will understand that the stress of being around lots of people for many different functions will just wear you out and you want to be in your best shape for the most important day, the wedding. I would also plan it when you feel best during the day :-) 

      Just to le you know, my nephew go married last year, and it was a large wedding with several parties before the big day. I paced myself and was selective about the events I went to. My family understood, since I let them know ahead of time that I would not be attending everything.  I also worry that I'll have to plan a wedding for my own daughter one day. That idea terrifies me. I'm sure you can imagine.

      If you are not in great shape, and your CFS is more of a severe case, I would have a very small/private ceremony and then have one party or reception and include all your partner's family to that. Either way, keep it simple :-) Hope this helps. KPD

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    • Posted

      Hi again,

      Thanks so much for your reply and words of advice. Much appreciated. It's really comforting to know that you were able to have a baby while suffering with CFS. It's something i know my partner wants, and i possibly want too (not really sure yet). However I get very worried i won't be well enough to become a parent and cope with looking after someone else- I struggle enough looking after myself. I also have to contend with mental health issues and bouts of insomnia so there are days it seems impossible. Although I know my partner would be very active in looking after a child, I'm aware parenting isn't easy. I'm still only 31 and not in a huge rush but i still get very worried about it.

      Anyway, i hope your week is going well and you're coping with your symptoms. 

      x

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    • Posted

      Hi again, Arlee!

      Like I said, if your are suffering with a mild case of CFS/Me (that means you can perform about 50% of what you used to be able to on a good day) then you will be able to have a small wedding and should be able to have a child. I'm going to be honest; it's not going to be easy, but you will figure out how to manage your symptoms, especially since you are saying that your partner will take an active role in raising a child! My husband has been so supportive throughout all the years! I know I'm very fortunate.

      You mentioned that you suffer from bouts of insomnia. I would suggest that you have that treated because as you probably know already, that can make it harder to function during the day...I actually found a good therapist who was able to treat me effectively (I still have restless nights, but not as many) with something that helps promote REM sleep. It certainly doesn't fix anything, but it is a lot easier to be more energetic during the day and to stay positive, if you are able to sleep during the night. 

      Please keep me posted on how you are doing and if you decide to have a wedding or not. I wish you the best of luck :-) KPD

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    • Posted

      Hope you don't mind my jumping in on your reply to Arlee. I'd love to know the product that helps you with sleep. I'm having pretty extreme insomnia. But if you feel it's not appropriate to share the product, I understand. 

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    • Posted

      Not at all, Jackie. I'm happy to help if I can. I was prescribed Doxepin 10mg at bedtime. This is considered a tricyclic anti-depressant-one of the oldest anti-depressants available and when taken in a low dose, it helps promote REM sleep.

      Unfortunately, you need to take higher dosages to help treat depression, but I can't tolerate more than that. It has always helped with sleep, though.  Also, Xanax .25 mg  (as needed) helps when I'm really having a difficult time sleeping. Good luck. Hope this helps. KPD

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    • Posted

      Hi again KPD,

      Once again, thank you so much for your reply. Yes, I would say I have a mild case of ME and am able to work around 29 hours a week (with difficulty!).

      The info you gave about sleep treatment is also really useful- have suffered with insomnia since I was a small child. I currently take Zopliclone occasionally to manage it, as well as a daily low dose of citalopram for my anxiety & OCD. Think I might need a medication review at some point though.

      Can I ask how old your daughter is now? How do you manage motherhood alongside your symptoms?

      Hope you're enjoying your weekend.

      Many thanks x

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    • Posted

      Hi Arlee,

      I'm glad to hear that you suffer from a mild case of CFS. I know it is still difficult but I feel for the people who are actually homebound. As hard as it is to function, I think it does help some when we are able to function at least 50%. 

      My daughter is 22 years old now and is getting ready to graduate from college. There were times (especially when she was very young and active) when it was hard to keep up with her, but I had lots of support from my husband and his family. Of course, I had my ups and downs, and that is why I decided not to have another child. Pregnancy was difficult for me because I couldn't take anything to sleep and my symptoms flared up. Some people actually improve with pregnancy, by the way. I did decide not to have another child because I couldn't face going through pregnancy again, but I'm so grateful that I managed to get through pregnancy once and have her. It's wonderful having her in my life! She's the best thing that happened and since I had enough ups with this disease, there were plenty of times i was able to enjoy being a mommy. I did have the luxury of staying home and not working outside the home when she was young, so I could save "all" of my energy for her. I only decided to go back to work when she was older and that is because I want something to distract me from this illness. 

      By the way, I have been reading some about the use of Low does Naltrexone (LDN) to treat many autoimmune diseases, and since some believe that many of the symptoms of CFS are due to a faulty immune system, this drug has helped some people. It's purpose is to help those addicted to opiates, but for some reason they are finding out that it helps some with CFS/ME and fibromyalgia. I'm going to ask my doctor about it at our next visit to see if he has any experience with it. You many want to read about it. I'm always looking for something "new" that will help me to manage my symptoms.

      I think the most difficult thing about this disease is not being able to predict how you will feel and not being able to commit to plans. In fact, last night, I had a rough night not being able to sleep, so today I feel very tired. 

      Interesting that you had insomnia as a child. Mine developed in my early 20s. I constantly was self medicating with over the counter meds such as Benadryl and Dramamine. I was actually diagnosed with CFS at age 29 after going through lots of stress in my life. I started with the pain of fibromyalgia (but had NO fatigue at the time) so a doctor tried treating me with Tegretol (an anti-convulsnant drug) and that is when my symptoms got worse. I think I may have experienced an adverse reaction to this drug. No doctor would buy that 2 dosages of a drug could cause chronic fatigue, but I just know something changed. 

      Sorry about the rambling. I just wanted to share some of my history with you. Feel free to contact me by e-mail if it is easier. Hope you are enjoying your weekend, too and are feeling well 

      Also, meant to ask you...are you able to exercise or does that make your symptoms worse? Just curious because some people benefit from light to moderate exercise, while others can't tolerate it. I find that 25-30 minutes of walking and light jogging helps me some days and makes things worse others, but I've always tried to keep up with it. 

      Hope I could help some. Please keep me posted on how things are going for you! Karen

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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    • Posted

      Good morning, Alree. I just wrote you a long reply to your last message about managing my symptoms while trying to raise a child and it says "waiting to be moderated." I'm not sure why, though. Let me know if you get it. If not, I'll try to write it again. KPD

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    • Posted

      HI Arlee, 

      Writing you again, since they haven't posted my comment. My daughter is 22 years old now, so she is pretty independent. Being a mom and raising her was one of the best decisions I made, although, there were some difficult times. Fortunately, I had a great support system-a wonderful husband and in laws who helped when my daughter was younger and had lots of energy. As you know, we all seem to have ups and downs and our symptoms tend to vary from hour to hour or day to day. On the bad days, I was lucky to have the support that I did!

      Pregnancy was difficult for me, and that is why I chose not to have another child, but I am so grateful that I made it through the pregnancy and am so grateful I have my daughter now. By the way, some women actually improve during pregnancy because of the changes in hormone levels. 

      While my daughter was young, I was fortunate to be able to be "a stay home mom" and could reserve all my energy during the day, so I would be rested when she came home from school. We enjoyed some wonderful years, in spite of me having CFS!

      It is interesting that you had insomnia as a child. I started experiencing in my early 20s and was diagnosed with CFS at age 29. I also battle with anxiety. 

      I've been reading some research about a drug called Low Dose Naltrexone and how it can help some with their symptoms. I'm going to ask my doctor more about it at our next visit. I'm always searching for something that may help alleviate my symptoms even more. 

      Hope you are having a nice weekend and are feeling well. Good luck to you, and please keep me posted. KPD

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    • Posted

      Funny, sometimes when people ask, I say I have a "rare autoimmune disease."  One percent of the puplation will follow that a more probing question.  Besides, really the rare part is the only thing I believe to be false. 

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