help

Brain and nerves
1

sarah55199 elaine62759 • about 5 hours agoHi all, things are really bad but I just wanted to sat thanks to all who replied to me about CFS. I keep trying to convince myself I haven't got this but it's not working. I was afraid to come on here because each time I got a prompt by email about other threads I was spooked at how much they all sound like me. I just don't have the energy to tackle this. It's like a slow and painful death and I am ashamed. I am failing everyone around me. I usually push myself to the edge and keep going and always pick myself up again. But not this time. I feel like I am in a cage or a tomb. All the things that I want to do, all the places I want to go and people to see....it's all impossible. There is no-one to help me. There is no-one there for me. In my utter despair and confusion of the last three years I pushed everyone away. I have kids relying on me and nobody to help. I've tried to rest as much as possible, I've tried to ignore it and carry on, I'd tried to do little things only (pacing), nothing helps.

I have an appointment with 'Psychiatry' 'Chronic Fatigue Department' for about a month away. I don't understand this. I mentioned to the GP that I was worried I was crazy, in that I went through abuse and came out the other end and now cannot form personal relationships with anyone. I used to be clingy and desperate but now it's like i've gone the other way, completely detaching myself from all humans except my mum and two kids. I'm just scared of everyone. So....why is this CFS team in Psychiatry? I was told i'd get a referrel to psychiatry and also to CFS team.... I don't get it. Are they saying they think it's all in the mind or stems from the mind? 

I am currently finding it hard to think straight. Or do anything. I've been signed off for two months but what if it's not gone by then. I can't even job hunt or sign on or attend meetings and courses that they put you on. I am so scared. How can I work? I can barely get through a day. I've tried three different jobs in the past two years and each time have just fallen apart with exhaustion. I wouldn't care if it was just me. But I feel bad for my kids. My sister and her kids are living this amazing life of wealth and comfort and all the trappings of success. We have no money, live in a flat and I haven't had one holiday in 7 years, not even a day trip. How can I ever improve from this??? I am 40 years old. If this had struck earlier I would have been able to at least believe that I could get my health back. But my kids drain me all the time and I give what little energy I have into loving them. That's all I can do. Help, 0 votes  Report  Share

ps scuse my cut n paste sarah, thought it might help you get responses that could help you

 

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I know it sdifficult not to worry, but worrying only makes you worse and you dream up all these things you think you have which you don't. SO stop trying to be a medical expert and pre guess what you think they are going to tell you, the internet is very bad for that. 

A diagnosis of CFS only comes after every other condition is excluded so it often takes a good year to be diagnosed and you don't want it because there is no magic potion to fix yourself. 

My advice is stay clam, stop thinking what it might be and let the experts tell you. DO you ahve a partner to help you with the children. If not, you will need someone to hel you get through this and take some of the load off you while you rest. If you do have CFS, pacing is key to getting through the day. 

Remember that you need to focus on making sure you keep some money coming in so you keep a roof over your head and food on the table. So don't get sanctioned. 

On the money front if you are on your own, make sure you are getting maintenace payments from the father. Its difficult bring ing up children on two salary but one is impossible, it can help  pay for even that desperately needed day out. 

Best of luck, hopefully its nothing more than something like depression which can make you very tired and at least there is medication to help treat that

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I'm a bit confused about who is actually experiencing stuff in this email. Is it Sarah? Anyway, I'm very sorry that you're suffering. I can see that a lot of terrible scenarios are going on in your head, which is never a good thing. This is understandable, and I'm not blaming you. I think we all have to develop coping mechanisms, especially those of us dealing with ME/CFS, because this illness is so devastating. I've found that meditation helps greatly, because it helps quiet my mind and minimizes the catastrophizing. There's a free online course you can take that's totally secular. Google Palouse mindfulness if you're interested. The most important thing I can tell you sounds cliche, but it can help immensely: take one day at a time. If you're thinking of ten different things at once, all of them horrible, you'll of course end up feeling horrible and overwhelmed. You need to calm yourself down, get plenty of rest, and pace yourself. Then go through the process, step by step, of getting diagnosed. You first need a complete blood workup, which can be done by a GP. Maybe you've already had this done? Then, if the bloodwork is negative, go to the solve me/cfs website. See if the symptoms resonate with you. If they do, go to an ME/CFS specialist or a clinic. You say you've been referred to a CFS team in psychiatry and you're worried about what that means. Surely you can call them and ask, or find out from your GP. Simply worrying is very counterproductive and only puts you in the role of helpless victim. If you act, you'll feel more in control. If there's a support group in your area, that could help greatly. You're not in this alone. As many as 17 million people worldwide have ME/CFS--if that is indeed what you have.

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I'm sorry to hear what you're going through. I'm going through trying to get a diagnosis myself, it's been 4 months so far, it's like being in limbo. So, are you getting sick pay? If not you can claim ESA, then you'd get help with housing benefit etc. Also, I've put a claim in for PIP. I might not get it as I haven't been diagnosed but I still have the symptoms, it's worth a try and you can get it if your working.

I'm 49 and I try to be positive. If I'd got this in my 20's, like someone I know, it would have been so much worse. At least I've done all the going out constantly with friends and had kids. I might not have been able to if I'd got it when I was younger. You need support from those closest to you including your kids. Pushing through will make you worse, pacing is the key. It's hard to come to terms with but when you accept it things start to get a little better in your mind which helps your body. I do lots of breathing exercises which helps to relax me. I wish you luck, remember it could have been worse. I remind myself in down times that all my tests are negative and I'm not going to die from it, I'll still be here with my kids x

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Worrying is only going to make you feel worse so just try and tackle one thing at a time. I was in college and full time work when I got hit with this. I've been on EESA and DLA now since January and it helps so much knowing that I have money coming in and not having that dread of not knowing if I'm going to be too ill for work in the morning or the following week. I do a lot of stuff via email, see if you can email someone in the benefits department who can help you get on the right route. Good luck! X

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Your feelings sound so familiar.  I am sorry that you are going through this. Thankyou for your openness.  It helped me to know that I'm not alone.   Just a thought about the CFS appointment in the Psychiatric department........since CFS tends to cause depression it makes sense to me that a CFS appointment would be in the psychiatric department.  Of course, I am from the USA and don't know much about how things work in other countries.  Btw, without God's help I don't know how I would have gotten through the last years.

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It is Sarah, l took the liberty rightly or wrongly of putting her post which was buried in the middle of an old thread, unseen and unresponded to. She sounded so desperate l thought she would appreciated resonses and help, so put it on a new thread in the hope others would advice and help support her, dont know if she,s seen it, hope she does.  and it helps her.

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Hi Sarah- I'm so sorry you are going through this. Try not to worry about the referral pathway as sometimes CFS can come hand in hand with depression. It took me nearly two years for my rhumatologist to diagnose me, and like a lot of us here we've have been told that it's in our head, and being dismissed. You have to stay strong and persevere. There will be times where it's more difficult than other times but it will get better. Where possible continue with pacing and asks your mother for help so you get a break here and there. CFS Is getting recognised more, and you should be able to Claim ESA and even PIP. Let us know how you get on. We are thinking of you X

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Hi all and thanks for restarting my post in a new thread.

Yes I have had all the other tests over the last two to three years. All it showed up was very low vitamin d.

I am off sick at the moment but still claiming jsa as you can get that up to three months which I am doing. Then if still ill claim esa I think.

I have theapt with the cfs team on Thursday. I am feeling pretty ill almost constantly. I have the odd burst of energy and I know I push myself to hard at that time and then pay for it.

I'm learning pacing is important. But sometimes there is only me and I have to do things. Some test then I really fall apart. Also it effects my brain. Brain fog and depression.

It affects my body in odd ways. Any exertion causes profuse sweating. I know gross. With the heat it's 100 times worse. I have a major intolerance of heat. Also a major intolerance of alcohol. So being shy I don't really socialise much now and alcohol used to help relax me. Also my libido has vanished. This is so depressing. I don't feel like a woman any more. I grieve for this lost part of me. Being single i fear I'm now left on the shelf. I can't lose weight. I just can't cut cals like before. So I'm terribly lonely and feeling like i so miss fun and love and all that stuff.

I will try and stay calm and focus on the problem and ways to help myself. If it was just me I'd give up but I have to find ways to not let this beat me cos of my kids.

thanks everyone

Sarah

oh p.s. what happens at the first cfs apt?? Just wondering. .

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oh Sarah, l and so many can relate to so much your experiencing, l caant really pace much at all, find it naturally difficult, even if l did have someone to do everything  l asked them to, l,d be  bored rigid just sitting, but l,m on my own and things need to be done, l do basic essentials, dishes, worktops, sweep and mop floor, 5-l0min at a time, then sit, either fatigue breathlessness, sometime nausea, morning worse from waking, just still fatigued and heavy achy. l too cant cope with heat, though l do love it, but cant sit in it, in shades nice. Aslo cant tolerate alcahol, and enjoyed  a g and t, as for you know what, a distant memory, doesnt leave much vice does it, chocolate l guess. l,m older  but still feel l,m missing out on so much, l have old friends simular age and older who are out travelling the world, weekends away, partying, l can hardly bare to look at fb, all the pics, The little energy and will l have is soon used up on essential self pet and home,

My kids are adults and living away, so for me company is my dog and cat, theyre good company, and your kids will be great company, be it they can need more doing for them and youll feel guilt at times, but your doing your  best for them. Always a work in progress with ups and downs, bad and ok days.   lve never seen a cfs team others have and will advice, l,m seeing rheumy in a week or so. So hope the team can advice and help you, good luck Thursday, take care  lynne.