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RANT - please feel free to ignore

OH…MY…GOD…I am SOOOO P*ssed off and sad and worried!

The first symptom, back in 2014 which eventually led to my MS diagnosis was crushing, crippling fatigue. I coped with it as best I could - but in Jan 2016 I went off sick. Feb 2016 I got diagnosed. May 2016 I had a phased return to work. I worked 5 days per week - 8am - 4pm in an A&E department (secretary not nurse or doctor). I was put on sickness monitoring.

Within a month or so I had asked to reduce my hours so now I work four days per week, 8am - 4pm. Monday, Tuesday, Thursday and Friday. The fatigue was still with me, but I felt that with a day off mid-week it was probably manageable. I guess it was for a time.

However in the middle of last year the “crushing” fatigue came back with a vengeance. I had time off sick in Sept/Oct because I couldn’t cope. When I came back to work I was put on sickness monitoring again. I had tried Amantadine but it didn’t help much. After a real struggle I was given Modafinil to try. For the first few weeks I felt great - my brain was finally alive and functioning and this obviously helped enormously at work.

Now i’m pretty much back to square one - my brain is still awake and functioning - but the rest of me is so, SO TIRED. I have constant dizziness which seems to be getting worse - I have trouble keeping my balance at times. I have pain most of the time even though i’m taking Gabapentin.

I had a lovely relaxing weekend just gone. I felt refreshed and happy. Didn’t sleep well last night cos I was thinking about work this morning. I was ok for the first 30-45 minutes but now I just want to curl up and sleep. I’ve put in a request to drop my hours again so i’ll be doing 22.5 per week, Monday, Tuesday and Wednesday. This constant battle will continue though and I don’t know how i’m going to cope. I know - that with the “welfare” system being what it is, i’m unlikely to be awarded ANYTHING because i LOOK just fine. I can do everything for myself that i’m supposed to do…but I cannot carry on like this for another 8 years until I retire.

IF (and it’s a big IF) I end up going off sick again I do worry that the absence monitoring will escalate and eventually…maybe…perhaps i’ll lose my job.

What the hell do I do if that happens??? I really can’t work like this but I don’t think i’d get any help.

Feel free to chip in with anything but the future is scary and bleak and the present is just awful and i’m feeling sorry for myself.

Rant over

Juls

Hi Juls

Your fatigue sounds horrible. I do feel for you, I had terrible fatigue when I worked, still do, but it’s manageable when you don’t have to keep alert for hours at a time.

As you say, you’d have trouble getting any benefits if you stopped work due to your fatigue. ESA is supposedly there for people in a similar situation, but the big problem with it is that unless you are put in the ‘support’ group, it stops after 6 months. And as you say you don’t have any real physical disability, apart from your fatigue, you’d probably not manage that. And the same is true of Job Seekers Allowance in that it stops after 6 months.

So apart from joining you in your rant, there’s not a huge amount I can suggest.

I do think it’s terribly unfair that someone like yourself is trying to continue working but is facing difficulties like this. I don’t suppose Access to Work would help your situation? Maybe someone will know. I hope so.

Sue

I’m sorry you are feeling carp. I don’t know how long you have been with the NHS. Many public sector organisations have good ill health retirement packages that will give your service plus extra years. They will also give a lump sum. Is it worth looking 8nto? Paul

Juls, I SO feel for you. Does the NHS (like some public service departments) have medical retirement I wonder - worth checking out?

Tippy xx

Where I work if you have to leave for health reasons your pension kicks in even if you are not at the ‘age’.

may be worth checking out, especially if ‘dropping’ hours would afect any ill health pension.

Also if you are in a union they should be able to advise you about the best course of action with your situation.

also, fatigue is probably the symptom I find most frustrating. For me, sometimes, if I take a break it goes away. I have numerous times, at work, gone into a dark room. Had a cry, closed my eyes for ten mins (not sleep). Conversation is one of the things that causes it the most. (Everyone has got ust to the fact that I don’t communicate when on a break).

so my suggestion, if within your role it’s possible that you are alowed extra breaks at the point you need them. Then asking for that ‘reasonable adjustment’. It maybe wourth thinking how you manage your fatigue when you are not at work and see if that can work ‘at work’. If your current role does not work with your Needs, is there other roles that you could transfer to?

your employer has a duty of care for you.

All the very best. Sorry if you were just wanting a rant.

Hugs

The NHS does have medical retirement, but as the trust is really NOT living up to it’s duties with regard to disability and work, it worries me that they would sack me if I was on long term sick rather than put me forward for medical retirement. Unfortunately there’s only one way to find out and that’s to go off long term sick

Hi Sarah Thanks for the reply. I am allowed extra breaks as and when I need them but there is NOWHERE quiet to go in the whole trust. Unless I want to sit in a broom cupboard for five minutes. The best I can do is to go and sit in the chapel but there are people in and out of there all the time. I don’t think transferring to another role is a possibility. I keep a watch on the trust vacancies all the time but all of them are in very busy department and i’d be jumping out of the frying pan and into the fire.

Interesting, from my totally novice thought process it would be a very reasonable thing for you to ask for and although I completely except private quite spaces are like gold. For you it’s not a want. It’s a need. Obviously only worth perusing if for you it would make a real difference.

Disabled loos are recognised as vital prevision in all work places. For a lot of people with ms a quite private space is vital.

…having a comfy chair installed in your ‘space’ could make it even better. Could cause some jealousy issues. That’s what is challenging with ms is work Needs, are similar to other people’s work wants.

I so hope you find a solution that works for you. Try my trick when trying to resolve issues I have ‘what would I advise a friend to do’ thought prosses and then make myself do it.

It is so frustrating that work places don’t come up with ms friendly solutiontions.

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You have my total sympathy. I too worked for the health service, and my greatest problem was overwhelming fatigue.

As department manager I went on a course on absence management. The lecturer appeared completely insensitive to illness amongst staff members. I asked him what to do about a member of staff who had had a few absences due to MS, and to my horror he relied carelessly ‘no problem, you can get rid of her due to incapability.’

When I reported this to my line manager however, fortunately she was also horrified, and explained that this could not happen.

10 years after diagnosis (I was 54) I began to feel that not only was the fatigue verging on the unbearable, but also that I really was incapable of doing the job as it should be done. I didn’t feel I was being fair to patients.One of the tests I did was Evoked Responses to diagnose MS; would you want to be dealt with by someone incapable of learning to use new equipment?

I saw the pensions people, who were very helpful. They sent for an up to date quote so that I knew exactly what I would get. Ill health retirement is enhanced, and there is a lump sum. I was assessed by the backcare team, who suggested different chairs, stools etc to help. Access to Work were also very helpful, and offered to provide a taxi to get me to work when my car broke down.

I could still walk, and appeared to be able to work, but I knew that everyone was just covering for me, which made me feel even worse.

After a further relapse, my line manager watched me walking to her office for my sickness review, said that I was not walking properly, and said I should take further absence. Lying in bed that night, around 4 in the morning I realised that that was it. I hadn’t got the strength fight any more. Finito and Goodbye.

I applied for ill health retirement and was seen by the Occupational Health doctor, who was lovely and said retirement was the best thing I could do, but if I wanted to carry on she would back me. I very definitely did not want to carry on, and 10 years on I feel far better than I did then, despite a few more relapses.

So in summary, I would say find out everything you can. I was fortunate at the time in that I got the lower rate of DLA (suggested to me by Access to Work) which I probably wouldn’t now, but even so, I found I was much better off than expected, and the relief of not having to go to work and pretend that I could still do it was immense.

Sorry if I’ve rambled, but what you said brought it all flooding back. I hope you manage to get something done to either improve your working life or leave it.

Good luck!

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Juls,

I am so sorry to hear that you are feeling so rough. Do you have any supportive advocates at work who you can get to support you. If ill health early retirement is an option and you are interested then you need to make this the easiest option for HR or Occupational health. If you have a good line manager or access to a good HR or union rep, get them on board. It should be in everyones interest to either keep you working comfortably or getting the right support to stop working with the least trauma. Do not be afraid to make a fuss (if you don’t have the energy - you must get help to fight your corner)

I was lucky enough to have a supportive line manager who helped me get IHER when there were no other options.

I wish you all the best

Mick

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NanaJuls, what does your Occupational Health physician say? I know they are technically your employer’s advisors, not yours, but they are notoriously independent-minded types and often as disdainful of half-witted and incompetent non-clinical managers’ nonsense as is any other decent clinician. :slight_smile: What I mean is, they can be very useful allies. But you’ve probably been round this loop already and got nowhere. I’m sorry you are having a rotten time.

Alison

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And another thing… Your linemanager might be more supportive of your departing on IHR than you think. A lot depends on how the costs are accounted for. IHR costs often don’t show up on your manager’s budget at all - they are often accounted for separately. In which case a sensible manager, when asked about IHR by a chronically sick employee whose absences are causing a headache, will bite the employee’s hand off! Getting a ‘problem’ employee off the books with no fuss and with someone else footing the bill can be a very attractive prospect. So don’t automatically assume that your boss would be against. If the costs came off your manager’s budget, it would be a different story, that’s for sure, but often they don’t. It is worth making sure you have a good understanding of what the decision process is and who pays, so you can get as good a picture as you can about where people’s priorities are likely to lie and whose objectives are most likely to align with yours.

Alison

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I’ve been to occupational health lots of times and been seen by an occupational health nurse. To be honest they don’t seem to be very interested in fighting my corner.

Thanks for your reply Mick. I really feel like i’m fighting this battle alone. The first time I was put on monitoring I asked for a meeting with my line manager, OH, HR and a union member. No-one spoke up for me…the union man was as much use as a chocolate tea pot and the OH nurse just SAT.

I feel so alone with this - wish I could find someone on my side who would fight with me. It’s so daunting and I just don’t have the energy.

Juls

Juls,

That sounds grim. What about friendly colleagues?

If there are no friendly allies at work, it might be worth a visit to the Citizens Advice Bureau or maybe the local MS society.

You need someone in your corner,

Mick

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Stop referring to yourself as being ‘tired’ or ‘fatigued.’ Everyone suffers tiredness and fatigue and those who don’t have m.s. think that our m.s. tiredness is akin to their tirednes - well it ain’t! You have m.s. and are suffering from a severe illness, you have period of being ill when you are very unwell. Go to see a solicitor who specialises in employment/disability issues. He/she will give you some sound advice. Think carefully before reducing your hours as it may adversely affect your pension in the future. I’m surprised you haven’t found out how much your pension would be if you were medically retired. (what you must not do is resign.)

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Hi Juls. I’m sorry to hear your predicament. I find escaping from the office really makes a difference. But knowing what hospitals are like it’s probably not that easy. Just a thought, you mention you seek refuge in the chapel, Im not sure if it’s appropriate, but you can get noise reducing headphones so that might help you block out some of the distractions. I’m beginning to realise the frustrations, I bumped into a work colleague, a lady that I deal with occasionally in another department. She knows that I have been diagnosed with ms. She commented that I looked so well. It is so frustrating when what you feel like doesn’t match how you look. I think she meant it in a nice way thou. I’m guessing that you haven’t any permanent health insurance that you may have taken out in the past? Have you tried the disability law service - someone else on here mentioned it. Also, what does your HR policy say, it might mention that they consider Ill Health Retirement rather than dismissal in certain circumstances and if you are not that far off retirement then the costs to make up the pension wouldn’t be as onerous as someone who was younger. Hope things work out for you.

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I kept going at work for a long time, reduced my days to four a week. I looked well but my body wasn’t working. At the end of a bad spell and my boss shouting at me in front of everyone else and after I tried to explain my eyes weren’t working well that day for the first time, I went home. I went to the CAB then my GP who said ‘Don’t you ever step foot in that building again Pam’ and then followed a long term of sick leave, pretense of discussion regarding work and what might I be able to do. By this time I was quite incapable, I looked ok but could not stand for a whole day doing anything. In retrospect it was horrid, my boss was awful and my face didn’t fit anymore but at the time I couldn’t see that. Now, I have each day to cope with whatever comes but most importantly, even though I am on benefits, I have freedom of choice, I can sleep, get up, try things, go back to bed if they don’t work. I have silence, no-one looking down at me or giving me concerned looks because I keep going. My time now is mine and it is quality. It is not the life I thought I would have but it is mine. And the boss has continued to shaft everyone from a great height! Thank God I am at home! Decisions are hard.

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How very very sad Juls that even you have to fight ‘a corner’ while working for the NHS??!! (you are I presume?). I mean what chance will other MSers have, who have similar symptoms as yours, NOT working in a medical environment? (although I am sure that there are some ‘good-ies’ around, although I have never met an employer as such…).

Where is the neurologist in this case, surely he should be able to address one and another internally?

I have always been a hard working person, always prepared to do overtime etc etc etc. However, after some sharp comments by a french lady who was my boss (‘you ere so sluowe…’) at ‘my’ american company I decided to start working for another company… , and what a mistake that was!!! Within no time I had to leave that profession, as the fatigue and stress took over dramatically due to the ‘Every new employee needs to prove himself first’-proces… (and I leave the fact that we had and have a disabled daughter at home, out of this!)

What I am trying to say is, stay where you are UNTILL the moment that you have decided that enough is enough…, as alternatives other than staying at home are scarce!

Good luck with whatever decision you feel you need to take.

Went to the doctors on Friday and he’s signed me off work for 28 days. Can’t tell you how relieved I am that I’ve got some time off. I am totally aware of the fact that not being at work doesn’t help the fatigue or dizziness in the slightest but at least I have a respite from trying to battle each day. Looks like i’ll soon find out exactly what happens when I have further time off whilst on monitoring! Watch this space! Juls