I am going crazy waiting for appointments and going stir crazy not working.

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I have been off work since April due to illness, they excluded everything else leaving me with ME. I was a teacher and to go from that to not been able to work is tough, does anyone else feel useless nor working?

It feels like forever waiting for appointments, for instance have been referred for Cfs service at my local hospital and found out today it's a four month waiting list just for an initial assessment/appointment. Just feels like there is little help out there

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  • Posted

    I've also been off since April and I'm having the same problems, I hope you're getting better support from the teaching profession then I'm getting from mine, the NHS

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    • Posted

      Have you not received much support from your school? It's really hard when it was such an active job and I am fairly young into my teaching career. Difficulty I have is some days I think I could go back and do it and others I can't do anything. Do you think you will go back to it? I could just scream at the nhs sometimes, I have also had stomach problems which I am starting to think is related to Cfs have you had any?

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  • Posted

    You have my sympathy.  I, too, was a teacher when this stuff hit hard.  I dragged myself through my last two years, but then I retired. I just couldn't manage all the work that goes into teaching college-prep classes any longer.  I didn't feel useless about not working, but now that the CFS is worse, I feel useless when I can't do all the things for my grandchildren that  healthy grandmas do.   

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  • Posted

    The problem with ME is (generally speaking)  people know little about it and unfortunately some Medics still question it's validity as an an illness. In respect of help, you could  check if there are any support groups in your area.  They can be helpful, but some can be a tad gloomy. I resonate with your feeling of not feeling useful, however, it's not your fault that you've succumed to this horrible illness. In fact, it seems there's a pattern of those who give more than their resources in energy terms who tend to succumb to this condition. I wish you luck in your journey

    c

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    • Posted

      Your comment about some medics still question the validity of ME is true, though it shouldn't be.  My family physician retired some time ago, and since then I was changed to two different physicians in my clinic.  The doctor I am with now is excellent in many respects, but I don't think he truly believes that ME or CFS really exist.  I think (though I am not sure) that he is of the old school that taught that if it doesn't show up on tests, it's all in the mind.  He never says this, but he sort of skips across the possibility of my symptoms being CFS induced.  After so very many years of understanding care, this is a bit difficult.  This doctor is not the kind one can "instruct," however tactfully, on the new reality of ME/CFS being a genuine physical complaint.  However, there are not enough physicians in my area who accept Medicare patients, and I'm not in a position, financially, to start looking for a new doctor who is outside the Medicare family.  I'm stuck with this doctor.  However, he diagnosed my heart condition rapidly and probably saved my life by sending me to the  hospital when he did.  But ME/CFS and lady parts?  Not so good.  :-)

       

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  • Posted

    Yes, this condition makes me feel a multitude of things and one of them, at times, is useless. It's tough, you're on roller-coaster, especially six months in when you're trying to get to grips with things. I haven't been able to work since early 2011 which, for a workaholic, has been a pretty hard pill to swallow.

    I know how you feel but you have to find things which keep you going. Don't overburden yourself and don't give yourself targets to hit but find enjoyable things to do which don't exhaust you. I love to learn so recently I downloaded a language app and began learning Swedish. Sometimes i do five minutes a day, sometimes i don't touch it for days but it gives me a sense of achievement, it works my brain and it's something i can do at my own pace.

    Help your body. Stop whatever activity you're doing BEFORE you begin to feel too unwell. Take breaks between activities. Let your brain rest, no tv, no books, just lie down, put on some headphones and listen to a relaxation track. After a multitude of treatments, is the only way I've found of controlling my symptoms rather than allowing them to control me. You have to find what works for you.

    Easier said than done, I know, but try not to beat yourself up. Yes, you want to be working and doing and being useful but right now, through no fault of your own, that's not always an option so give yourself a break. Do what you can when you can.

    As for appointments, the best thing you can do is be proactive, ring up and get yourself on the cancellation list.

    Right, I'm probably ranting or rambling but it's five to two in the morning and I can't sleep so I hope you'll forgive me!

    All the best

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    • Posted

      hmmmmmm that's EXCELLENT advice. please don't beat yourself up as it lowerns your immune function further. and ''YES'' for the ''Workaholic'' (and it seems to happen to the 'Workaholic'' type personalities) it can be very difficult.  to get better you're going to have to 'pace' yourself i.e. identify a ''baseline'' energy level that you can work with each day without the ''relpases'' and stay within those parameters as much as possible. with an early diagnosis and treatment, recovery rates are high, so in the mean time be patient with yourself, don't overdo it and the chances of recovery are much increased.

      c

      p.s Circadian Rhythm disruption is a symptom, hence the late night/early am responses.

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  • Posted

    Hi there katoreo,

    I miss my working life too as I loved my job and still have hope of returning some day. As mentioned already, resting is key and getting the balance between rest and activity is difficult. My own experience is that my mind happily forgets I have this condition when I'm having a good day and so I'll do more than I have in the energy reserve tank only to leave me kicking myself when I'm bed bound the next day. It is a very strange condition and often misunderstood. On the plus for you, you have a referral although it seems a lifetime away, 4 months will pass quicker than you thought. I go with zombie nichola's idea of asking to be called/written to of a cancellation.

    It is hard to sit back and feel you are twiddling your thumbs and coming from such a busy job as a teacher prior to this will leave a big gap in your life right now. At present, the difficulty lay in accepting that to hopefully get back to your job, you have to accept this time out. Work with it, not against and and don't push yourself.

    I was a keen walker before this and miss that too. What hobbies did you enjoy before? Are there anythings that you can do now that you couldn't when you were teaching? Yoga, meditation or really relaxing can be helpful. Massage can also unless, like a friend of mine with this, it causes more pain. What I've also found useful is looking at what I have achieved rather than what I have not in a day. Yesterday-I know I did too much as I had appointments to attend that were important. Today, I must rest because of this. I was so busy doing these things that I didn't think that I could rearrange any of my day.

    I really feel that resting with small amounts of activity, being gentle with yourself when you over do things, asking for help (this one can be very difficult indeed) and being mindful and accepting of our limitations are the main considerations. People do recover from this and that, I feel does give hope.

    Beverley

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    • Posted

      Your post made me thing:  What do I miss most?  Walking.  Visiting my chidren and grandchildren who live out of town.  Going to church.  Taking part in my writing group.  Walking my dog daily.  Dancing.  Sleeping well at night and waking refreshed.  Keeping appointments--not having to cancel because I was  having one of "those" days.  Feeling strong and capable.  

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    • Posted

      Hi phillis,

      It's amazing how much we have all had to miss because of this condition. I wish so much to wake up one morning and feel refreshed! It's been so, so long since I last had that go get'm feeling. Not something you can really put on your Christmas list : )

      Beverley

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  • Posted

    Hi! Feeling useless is one of the main emotions that I struggled terribly with.  You are definitely not alone in that one!

    Yes, stomach problems have a connection to ME.   There are very many people with ME that struggle with IBS. I do better when my stomach problems are under control. I will private message to you the name of a book that  I originally  checked out from the library which can explain a lot about ME., including the stomach connection.

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    • Posted

      IBS can also cause malabsorption of Vitamin B12 a deficiency of which which can also be misdiagnosed as CFS/ME, Crohn’s disease, gluten enteropathy (celiac disease), or any other diseases that cause malabsorption of nutrients and includes people with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

      It is reckoned that 40% (or 47 million) Americans are B12 deficient and aren't even aware of it.  Untreated it can lead to irreversible damage to the nervous system. There's no reason to assume that we don't have a similar situation here in the UK.

      I am not a medically qualified person but one who has suffered the effects of B12 deficiency due to pernicious anaemia for 45 years.  It took 13 years between gastric surgery in 1959 before I got a diagnosis by which time I was a walking Zombie so I have an interest in promoting awareness of what many doctors dismiss or simply misdiagnose.

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    • Posted

      I think I mentioned on another discussion that my mother suffered from pernicious anemia and had to take Vitamin B12 shots regularly for quite some time, and then periodically for a good part of the rest of her life. Those first weeks of shots brought her, as my dad said, "back from the dead."  My clinic won't give the shots. I asked, but it was quite some time ago. I was tested, however,  and my B12 level was, according to the lab, normal.  So, I've used subliminal B12 tablets for months at a time.  They don't seem to make much difference, so maybe the tests were correct.   

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    • Posted

      Sadly Pernicious Anaemia can be inherited and B12 injections are for life. You must ask your doctor to test you for Intrinsic Factor and for Parietal cell Antibodies to determine whether you have P.A,

      If you are not producing Intrinsic Factor and/or you have the Parietal cell antibodies then the sublingual B12 tablets will be doing no good at all.

      What are your neurological symptoms?  Can you equate them to those of your Mother?

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    • Posted

      Thank you for the information.  It will be a couple of weeks before I can see the doctor's nurse practioner, but I will pass on this information.

      No, my mother's symptoms were different.  Again, thanks for taking the time to reply.  

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