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Author Topic: Newly diagnosed, scared and alone  (Read 1075 times)
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Kungfukitty
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« on: July 24, 2017, 04:09:46 PM »

Hi everyone,

I was officially diagnosed with mild to moderate cfs on Friday but had been coming for a while. I am still at work but struggling everyday at the moment. Though I have periods of remission every time the cfs switches back on it is worse than the time before. With the help of a doctors note, I have reduced my hours at work and have arranged to work from home two days a week to avoid the long commute which helps. I am in a senior position and cognitively struggling. I am worried that I will not only lose my job but my home too as I can't envisage keeping up with the mortgage without my wage. My husband is supportive but doesn't understand why I can look so well and yet be so ill. I came home early from work and tearful today and he snapped at me and then brought me a cuppa. He is worried too about where the money will come from if I could no longer work as he is self employed and business very erratic.

If I leave work because of ill health how does the system work when there are periods when I am well and fit to work? I can't expect the charity I work for to support me for long. I get just one month at full wage and 1 at half pay. That will run out very quickly. I have heard horror stories about getting benefits and want to avoid that as long as possible.

And then there is the lack of help. Our ME clinic was decommissioned 3 months ago. The only thing the doctor could offer was SSRI treatment, which I declined after a previous bad experience. So I am left trying to 'pace' myself and taking each day as it comes.

I joined the ME Association and got some good advice and leaflets, but nothing yet I can actually use.

I am 54 female living in Nottingham and feeling very lost and alone

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Kungfu Kitty
AKA - Jo

My motto used to be "The more you sweat in practice, the less you bleed in battle!" Gory I know but it kept me going when I was training hard for my black belts. Now I don't know what it is but for now, like the Led Zeppelin song,  I am "Dazed and Confused.
roger
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« Reply #1 on: July 24, 2017, 06:12:51 PM »

Hi KF, and welcome to the forum,  though I'm sure you wish there was no need to come here.

First, you have to understand two things 1) you'll get very little help from the medical machine. 2) The reason that you get worse following remission is that you keep going back to work. I hope that doesn't sound too harsh and I know that it's not what you want to hear, but accepting those two things is a good first step to wellness.

At this stage, I'd suggest that you click on the CFS info link at the top of the page and read what's there. It would be a good idea for your husband to read that info to so that he can get a better understanding - it's not his fault that he lacks that understanding at the moment because we're taught that sick people have to look sick.

Having done that, you'll have questions. Please come back to the forum to ask them. We're here to help and we'll do so to the best of our ability.

Best wishes.

Roger.
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Talen
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« Reply #2 on: July 24, 2017, 08:51:30 PM »

Hi and welcome,

The .gov website has up-to-date information on help with paying interest on your mortgage.

https://www.gov.uk/support-for-mortgage-interest

Hope this helps.

Talen



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Kungfukitty
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« Reply #3 on: July 25, 2017, 03:50:25 PM »


The .gov website has up-to-date information on help with paying interest on your mortgage.

https://www.gov.uk/support-for-mortgage-interest


Oh it looks like I won't get this either as I have missed the deadline. Apparently it is being replaced by a loan though. I don't think that adding to debt to help with a debt can be claasified as help or a benefit.

I went to the turn to us website and all I am entitled to is 11 towards my council tax. My husband brings in close to minimum wage so I guess that is supposed to be enough for two people to live on.

I can't see a way to not work. Will explore different work closer to home, though I would feel really guilty about taking a job I know I might not be fit for in the near future.

This is a nightmare to work through cry

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Kungfu Kitty
AKA - Jo

My motto used to be "The more you sweat in practice, the less you bleed in battle!" Gory I know but it kept me going when I was training hard for my black belts. Now I don't know what it is but for now, like the Led Zeppelin song,  I am "Dazed and Confused.
neptuno
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« Reply #4 on: July 25, 2017, 05:19:32 PM »

Hi, like many of us the financial worry of stopping work saps our energy energy further. You need to get a better picture of any benefits you could be entitled to. Sometimes the local council has a benefits adviser....I would recommend you have a look at the benefitsandworks website and look at ESA and PIP benefits which would support you through this very steep learning curve. It is scary...but it can be done. X
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Talen
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« Reply #5 on: July 25, 2017, 07:36:34 PM »

Good advice from neptuno.

I am sorry the link didn't offer anything useful. As you say, getting a loan to pay a loan is a slippery slope and best avoided.

I know it is very difficult to take in information when newly diagnosed but if I can offer one piece of advice it would be this:

The quicker you stop all activity, rest, rest and more rest followed by adoption of a behavioural management strategy called Pacing after symptoms lessen, the more chance you have of recovery and a shorter period of illness.

Its extremely difficult to achieve when you have to factor in home economics.  I remember a while back, Roger advising someone in a similar situation as yourself who also had several children.  He advised getting as close as its feasibly possible to the rest, rest and rest if you cannot give up employment due to financial reasons eg shorter hours; alternate work day then a rest day; less stressful work; regular rest periods.

I have moderate brain fog today so apologies if my post does not flow very well.







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agapanthus
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« Reply #6 on: July 25, 2017, 10:23:42 PM »

I just wanted to welcome you to the forum Kitty and acknowledge how scary it can be especially at the start of this illness when you have been used to a different way of life, and that seems fixed. It is hard to take in and worrying re the practical side of life. Of course, the same is true of any illness, and the benefits system has tightened up so much that it is more difficult than in the past.

When my husband had a severe mental breakdown, I too was in the situation that you were in with 3 teenage children and I feared that we would lose our home. It was only because he worked for Local Govt which was more generous then (20 years ago) that we survived. I myself then developed ME/CFS around the age that you are now and it was very hard to get through the worst phase, although for a while I was able to work part time.

However, at the moment, whatever you do, in my opinion you should not just resign from your place of work (unless you have another job to go to) as you could then cause a problem if you did need to claim ESA. The DWP might not be willing to help initially as they may claim that you have caused the situation yourself. Ideally you should always wait for the employer to go through the due processes of dismissal through capability issues rather than resign. If you were signed off sick and the time ran out for any payment, then you would be entitled to Statutory Sick Pay for 28 weeks and normally you should claim this. It's not very much unfortunately, (89.35) but you would need to claim that before you could claim any benefit such as Employment and Support Allowance.

I know very little about the processes of Universal Credit, and some places are now being rolled out to UC, and that seems to have made things worse rather than better for people and there is also great pressure now to keep people at work even if they are sick.

If you do have periods of remission, it does sound as if your body could be capable of mending as long as it is given plenty of TLC. Clearly that would not be possible in your current post, but if you were able to work in a less stressful position for less pay, and closer to home, then maybe it would be possible to pace better. Would you be able to pay your mortgage though with that kind of work and pay (ie part time and possibly at a lower rate of pay)? At the moment the worry and stress of how you are going to manage will certainly be adding to the illness of ME/CFS that you are suffering.

I personally don't think you should feel guilt anyway about looking for other work. The only tricky thing is if you should tell them about ME/CFS as a disability or not. You don't actually have to, but if you don't then you cannot ask for, and they cannot put into place, 'reasonable adjustments' to support you. You can of course not tell them at interview as you don't have to then, but tell them afterwards if you get the post. There has been so much discrimination against disabled people in the workplace, that it's often the only way people can get employment when they are disabled.
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Kungfukitty
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« Reply #7 on: July 26, 2017, 08:30:51 AM »

Hi everyone and thanks for your support and guidance. Right now I no longer feel alone and know that someone out there can guide me. That alone has given me a huge lift today, so thanks again!  c017

I have already put in plan some working from home days and shortened my week and hours spent in the office on a daily basis. It is too early to say whether this type of pacing is working but I am in third gear today after a week of not being able to get out of first. Third gear is my "I can pootle about ok today". Fourth and fifth gear is when I am in remission. I have found this useful to let colleagues know how I am on a day to day basis or even an hour to hour basis. I rarely get past lunch in third gear.

It is really reassuring and positive that if I am experiencing periods of remission that my body is capable of healing itself. I am working out my triggers and I know being too hot and too cold can cause a flare up when in remission. I have a suspicion that alcohol may have caused this current relapse. I went through an early menopause (20 years ago) and before I was diagnosed with ME I asked the Doctor if I could go on HRT to see if that brought my energy levels up. 10 days into my first course of HRT the ME switch flicked off and I felt like a 20-year-old again! Lots of energy. I got my fitness levels up (Zumba and Yoga mostly) and I started to build back some muscle I had lost. I was happy, sociable and full of life. It lasted three beautiful months. I don't think the HRT switched off the ME, but I do think it helped me get rid of the general low energy issues I have had for many years. It has made the gap between the well and not well periods so much clearer. I will stay on HRT for as long as it is healthy to do so.

As for money, I think I will try and find work elsewhere first before I go down my incapacity to work with my current employer. There is a job going that is 100% work from home and I might be able to persuade them that it can be done on part time hours. Worth a shot. If not I will work from home more and more until I have to officially go part time. I understand the advice that if I don't rest I will risk worsening relapses, and though I am willing to compromise and I am finding a new discipline to rest frequently rather than pushing through, I need my work for my mental well-being and stability!

Thanks for making me feel so welcome and I think it is time I explore the other messages in the forum to try and find some answers there.

Working from home today so I better get some work done!

Thanks again!
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Kungfu Kitty
AKA - Jo

My motto used to be "The more you sweat in practice, the less you bleed in battle!" Gory I know but it kept me going when I was training hard for my black belts. Now I don't know what it is but for now, like the Led Zeppelin song,  I am "Dazed and Confused.
agapanthus
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« Reply #8 on: July 26, 2017, 08:44:27 AM »

Hi again Kitty.
So pleased to hear that you felt supported and cared for by comments on here and that today is a better day! Just knowing you are not alone can help sometimes to get you into a better place to begin to go forward. I really hope you can get something easier in place workwise, as it sounds as if it will make a difference to how you feel.

It is interesting to hear that HRT helped you. My own ME/CFS developed during menopause, and although in my case I also believe that hypothyroidism played a part (was diagnosed with that already), I now can see that the hormonal upheaval never really resolved for me as I expected it to.

I am now 65 and 15 years past menopause, and although my endocrinologist has suggested HRT (as I am now also diagnosed with osteoporosis), I personally feel it's too risky at my age and am surprised that it's being suggested. I am however now using bioidentical progesterone. Interestingly my migraines which worsened after the menopause have almost entirely stopped due to doing this - even though that wasn't my chief aim in taking it. So that's just one illustration of the hormonal changes that can worsen health. I am actually taking it principally to help with my bones a bit, and also my chronically low cortisol (something I found out via private testing).

Incidentally, I think I would go easy on the Zumba with ME/CFS depending on how you felt afterwards of course - can be high energy I think (never tried it!) and could be too much if you are in the recovery mode.
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roger
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« Reply #9 on: July 26, 2017, 08:59:00 AM »

Hi again, Jo,

You're now thinking all the right thoughts and that's a huge step towards getting better  smile
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Kungfukitty
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« Reply #10 on: July 26, 2017, 09:06:13 AM »

Incidentally, I think I would go easy on the Zumba with ME/CFS depending on how you felt afterwards of course - can be high energy I think (never tried it!) and could be too much if you are in the recovery mode.

Yes I agree. I think that it is a dance step too far! It seems so strange after years of being in the peak of aerobic and physical fitness, with an understanding of using energy aerobically creates more energy i.e. you get fitter to be able to do more, to have to come to terms with the absolute opposite. I guess it is about priorities, as with a tight financial budget, it is about making the right decisions on how energy is spent. Looks like I will become an expert again in managing not only a tight financial budget but an energy budget too!

x
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Kungfu Kitty
AKA - Jo

My motto used to be "The more you sweat in practice, the less you bleed in battle!" Gory I know but it kept me going when I was training hard for my black belts. Now I don't know what it is but for now, like the Led Zeppelin song,  I am "Dazed and Confused.
Kungfukitty
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« Reply #11 on: July 26, 2017, 09:10:38 AM »

You're now thinking all the right thoughts and that's a huge step towards getting better  smile

Thinking I am good at but sometimes we need our thoughts shepherding! x
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Kungfu Kitty
AKA - Jo

My motto used to be "The more you sweat in practice, the less you bleed in battle!" Gory I know but it kept me going when I was training hard for my black belts. Now I don't know what it is but for now, like the Led Zeppelin song,  I am "Dazed and Confused.
roger
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After 12 years of trying, I'm now A OK


« Reply #12 on: July 26, 2017, 09:37:06 AM »

Yes, Jo, a bit of guidance is good, and Talen, Neptuno and Agapanthus provided that. But not everybody accepts such guidance, always seeking the 'magic bullet' that doesn't exist. You're not that 'everybody', and that's what makes the difference  smile
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