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I just can't remember things and getting confused

Posted , 8 users are following.

bryan45762
bryan45762

hi there I was diagnosed 1 year ago I was working as a chef at the top of my game there was serious breaches under floor heating fault ventalation and the heat was 40 to 50 degrees and the extracted on the roof socked in the smoke from the chimmneys could these conditions have caused me to burn out and end me with Cfs I was always able to carry out shift work nothing could have stopped me until I got this my life has turned up side down I can't even do my job any more is there something I could do to get me better quick I feel like a nicin poop lol my legs are sore my head splits earache from a different level dizziness I am 34 and I feel like an old man before my time 

2 likes, 14 replies

14 Replies

  • emilys1984
    emilys1984 bryan45762

    Posted

    Hi Bryan!!

    I was only diagnosed last month but I feel exactly the same as you....I wanna know what to do so I can get better asap!!   

    I've always been a busy bee; gym five times a week, two children, working a 48 hour week as well as going to college but now I sometime cant get out of bed until 3pm and then still feel exhusted!

    Yesterday I felt good so managed to get a lot done but unfortunetly woke up today in terrible pain ending with me back in the doctors with them telling me I'm nww depressed and they have put me on Fluoxetine.  I really don't want to have to take them but I can't go on with this yoyo mood I have from this illness.  Some days I feel like I don't want to be here anymore but then on a good day life is great.  

    What I have learnt in this one month is to listen to my body and rest as much as I can.  I don't know if all this resting will speed up my recovery or if I'll ever fully recover at all......we can only hope.  I've added more protein to my diet but sometimes I can't eat as the ME is effecting me being able to swollow so I've lost a lot of weight so I've gone and got some complan drinks from Boots which are full of goodness-maybe they'll help?!  I'm slowly learning that the doctors don't have a clue so its all trial and error with our own try outs.

    I know I've not answered your question but I hope sharing my experiance might help you or anyone else reading this.....a problem shared and all that jazz smile

    All the best,

    Emily x

    • alison44235
      alison44235 emilys1984

      Posted

      I have had M.E. for nearly 33 years now and am so sick of it.The last 3 years I have not had one good day. Before then I at least had the occasional good day. These days I feel as if I can't go on and think I am going to collapse. I keep going though somehow. Nobody understands how hard it is. My husband tries to. I have been in touch with a clinic (i am not allowed to mention the name on this site) this week and am wondering whether to shell out £545 for them to help me with diet etc. My problem with this is that everything else has failed me and one or two I feel were a big con. So far I heve wasted quite a lot of money on treatments that don't work. I did try an N.H.S. M.E. clinic this year, but they caused me so much stress that they made me worse.  Sorry to be so down about it, I do try and be positive most days but it is a struggle when I am so exhausted all the time.

      I hope this gets posted as it has taken a lot out of me to write.

      I had better get up now and cook tea.sad

    • emilys1984
      emilys1984 alison44235

      Posted

      Hi Alison!! Ahh I really do feel for you sad I've had a bad day today, got up at 3pm and am back in bed already. That's a hell of a lot of money for a diet!! Do they have any proof that their diet has worked??

      I hope you don't mind me asking but what did the NHS clinic entail?? My doctor has just referred me so it would be nice to know what to expect. X

    • alison44235
      alison44235 emilys1984

      Posted

      It is  not just a diet. The M.E, clinic treated me badly for three sessions and never got as far as finding out what they could do for me (they would not tell me in advance) and I just could not set foot in that place again anyway. I am sure you will get on allright I think I was very unlucky wuth the occuparioanl therapist I was dealing with. Apart from being very patronising she sent a letter to my doctor with 14 mistakes in it and two things I did not want disclosing to him and never even told me in the first place she would be sending it,in the first place. Good luck
    • sally_14743
      sally_14743 emilys1984

      Posted

      Hi Emily 

      hopefully when u go to your m.e clinic you will get a good occupational therapist as they really helped my hubby work out if he was suffering from depression or just getting depressed about being ill ... My hubby came off his anti depressant when he realised that they weren't helping him manage his emotions .. He discovered from his OT he burned most energy in emotional stress . Strategies have helped him not get stressed and not being on anti depressants he is no longer flat neither happy nor sad ..he can be happy and he can be sad but he feels he can handle the sad .. Hope that makes sense ..he is recovering slowly .. But key is to stop using energy in a good day to catch up on everything you haven't done because you will keep sinking worse into the illness... Pacing is key ..the OT said they don't understand why but your immune system is stuck in red alert mode .. Causing fatigue , etc etc as it fights an illness which frankly isn't there anymore .. And by pacing you allow your body to gradually regain energy until flick the switch off goes and your immune system reboots to normal. Each time you use too much energy more than u actually have you reinforce your immune systems belief you are actually ill fighting a virus . You feel like u are fighting flu again ... It's absolutely awful , to watch someone you love robbed of energy , and their personality disappear due to fatigue but it's so inspiring to watch them enjoy what they can be determined to pace themselves well and now to watch them achieve things and improve and see recovery as a reality yes maybe 2 or 3 years away but each month an improvement ..hang in there and pace ... Thinking of you 

    • emilys1984
      emilys1984 sally_14743

      Posted

      I'll definitely give the clinic ago 😊 You sound like the best wife ever 😊 Your husband is very lucky to have you being so supportive. I'm going to look into this 'pacing' that I keep hearing about as I think I overdone things on Sunday/Monday and now I'm in a real bad way on the sofa sad x
    • sally_14743
      sally_14743 emilys1984

      Posted

      Thankyou Emily 

      you will get your head round it 

      takes time and then u will start to pull out of it 👍👏

    • alison44235
      alison44235 sally_14743

      Posted

      I have to pace myself big time, justmdoes not seem to make any difference at the moment.

      I wish the clinic had helped me as I say I was very unlucky.

    • Beverley_01
      Beverley_01 emilys1984

      Posted

      Hi Emily,

      Just wanted to say I feel the same as you, I'm not depressed but this condition has led to me having some very low mood spells. I've not been prescribed anti depressants and wouldn't take them myself. I've recently started to feel less stuck with things though and much less likely to feel I wish I wasn't here. I look at it like the weather- the dark clouds disappear and we do get sunshine. I too find it difficult having to go back to bed but, rest is needed. Be kind to yourself and do things that make you feel good. I had a long candle lit bath and face mask last night. I was still shattered after but felt more 'ok' about it, if that makes sense?

      Be good to you

      B

  • emilys1984
    emilys1984 bryan45762

    Posted

    Oh, also, I started a diary this week.  I type it every night.  I find it helps me to remember things the next day, gets my frustraition out and keep track of my emotions, triggers etc.  I really do feel so much better after geting everything out as I don't really have anyone to talk to.  Maybe give it a try and see if it helps you.  I'm also taking Omega 3 Fish Oils.  They're meant to be good for your brain but the way I see it is that anythings worth a try hay! x
    • abot24558
      abot24558 emilys1984

      Posted

      I keep a list of the once familiar words that I've now forgotten! the list grows longer. Of course, I'm 75, so aging is also a cause, perhaps. Memory very limited. Except I do remember some of my dreams. Some of the time.
  • jackie00198
    jackie00198 bryan45762

    Posted

    I can't tell too much from your post. But, no, there is no quick way to get better. To maximize chances of getting better, you need lots of rest, and you need to pace yourself. If you try to push through the fatigue and the symptoms, you'll probably make yourself worse. That approach does not work for ME/CFS.

     

  • sally_14743
    sally_14743 bryan45762

    Posted

    Hi 

    I have met people who had CFS for 6 months but they are rare and it seems to me they stopped doing anything at all at the first sign of fatigue . Stopped work totally took to be for 3 months and then started to recover . These are often teenagers , who live at home no responsibility or the lucky few who can just stop and manage financially .. Sadly for most people they can't stop dead and recover . They push on doing more damage and getting worsening symptoms then the body stops you . But you can recover , but the damage has to be repaired and it will take time . Unfortunately the medical profession have no tablets no cure , but they do realise it is down to your body to repair itself hence rest ... 

    Just to think about , before penicillin if you got a urine infection you were in agony , your only cure was your own bodies immune system ..looked this up in an old medical book my aunt had .. Remedy drink plenty hot compresses on abdomen take to bed for 1-2 weeks ...😱 Right now we get antibiotics don't stop work feel better in 2 days . In the past people relied on their bodies immune systems to fight everything off and they feared infection they took to bed with colds in fear of pneumonia which killed .. They knew how to help their immune system work.. We have lost that skill and rely to heavily on drugs ... But our bodies can still fight and can still recover its just time and with CFS it takes time to start recovering but you will if you allow your body to repair ... Diary good idea .. Just mark days you feel slightly better , may be 2 days a month to start then 3 then 4 over a year you can see improvement ... Starting now feeling slightly better may mean headache eased and dizziness less so u can walk to the corner of your street and back relative to your level of illness. Tip.. Get referred to CFS/m.e clinic in your nearest hospital they can prep scribed meds for constant headache .. Stops the headache totally .. (Epilepsy drug) my hubby took for 1 year then weaned off them now no headache at all .. And his dizziness went after 2 years only comes back for an hour or so as a warning if he overdoes it now .. E swam in the sea went a bit mad jumping in waves then felt dizzy as an example now ... You will get better but will take time ... Feel for you 

  • deborah40435
    deborah40435 bryan45762

    Posted

    Mmm, sorry Bryan, but there is nothing 'quick' about fixing ME/CFS.  I'm not trying to depress you! But slowly, slowly is the best way to gain recovery or remission. I have lived with CFS for my whole life (I'm nearing 60 now), but was only diagnosed about twenty years ago....... I have had better periods and worse periods - I'm back in part time work now after fifteen years on 'the sick', and loving it. But the whole key, as others have said, is listening to your body...... establishing a baseline routine which is broken into different 'activities' e.g. 9a.m. Make a cup of tea; 9.15 Rest; 9.30 Get washed and dressed; 9.45 Rest. 10am Have some breakfast; 10.15 Rest.

    (Rest means lying down on your bed quietly); 10.45 Read the paper; 11am Rest; 11.30 Walk round the garden; 11.45 Rest....... etc etc. Once you've found your baseline its important to stick to it on good days and bad, otherwise we tend to feel better one day and so do too much and this creates the yo-yo effect. When you've managed your baseline for a couple of weeks you can gradually adapt it ... lengthen the 'active periods by five or ten mins.  I don't know if this is helpful...... at the moment my 'pacing' consists of keeping 1/3 of the day 'empty'. So, if I'm busy in the morning and the evening, I keep the afternoon free.etc. And I try to keep one day a week 'empty' to rest and potter.  I do hope that you are able to find your way back to health. Best wishes.

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