Feeling scared and low: Hello everyone. I am... - PMRGCAuk

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Feeling scared and low

Pippz20 profile image

Hello everyone. I am interested to know if anyone else feels like they are just existing and trying to get through each day. I was diagnosed 18months ago and was tapering the pred until I had a massive flare up in March and was off work for over 3 months. I am 52 and the head of a food department in a secondary school. I realised that I wouldn’t be able to return to work full time and have reduced to 4 days a week, two weeks in however and I am really struggling to cope. Because I look ok, school are treating me as a normal teacher, the only concessions I have are a lift key and no break or bus duties, other than that I have a full timetable and the department to run. I still have a (older) child at home and a mortgage to pay so have to work but am scared that I might not be able to continue, the only option I can see is reducing my days further.

By the time I get home all I want to do is cry, I am so tired and achy as I cannot sit down for any period of time during the day and I know this is making it worse. I am isolated from my friends as I can’t go shopping, for nights out etc. I am also isolated from my friends at school as I just have to stay in my classroom and rest whenever I can. I am however very lucky to have an amazing husband so shouldn’t moan.

Sorry for the long post any advise or benefits of wisdom greatly appreciated.

Xxx

43 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Sorry to hear you are struggling so much.

Your employers really need to be taking your illness much more seriously than they are…do you have a union representative that you can approach, or can you get your line manager or HR department involved.

Would also suggest you speak to your GP to get help with your feelings, Pred can cause feelings of depression or hopelessness, and he may also be able to help with your work situation.

There are other younger members on the forum who are/were working who I’m sure will be along with their experiences shortly.

Never apologise for having a moan, we understand, and we are here to help when we can.

Have a look at this post, it has links that may also help - healthunlocked.com/pmrgcauk...

Pippz20 profile image
Pippz20 in reply to DorsetLady

Thank you so much. I really don’t like to moan and put myself forward at work as I think they will just think I am being a pain. I have always been such as busy active person and hate the sympathy etc. My line manager has told me I am being paid to do a job so have to get on with it like everyone else!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Pippz20

Your LM needs a lesson in manners and compassion. Under the Equalities Act, your illness needs to be considered, and your working conditions need to be amended.

Try and get Union ( join one if needs be) or HR involved, they know they have to help you, even if your LM doesn't!

You aren’t asking for anything you aren’t entitled to, I know it’s difficult, which is why you need someone to support you in this matter.

Pippz20 profile image
Pippz20 in reply to DorsetLady

Thank you. I will make an appointment to speak to the head or HR xx

GOOD_GRIEF profile image
GOOD_GRIEF in reply to Pippz20

Perhaps going armed with a couple of suggestions of what might be helpful to you would be a good idea. Maybe shorter days, or switching your off day to the middle of the week, would give you some respite. Or, perhaps, a stool for you to perch on instead of standing, or a re-shuffling of duties that would allow you some seated time.

Pixix profile image
Pixix in reply to Pippz20

Make a list before your meeting...that’s my suggestion! Consider taking in a friend/colleague? PMR makes my brain less able to handle stressful meetings & this helps! Also wondering why you can’t go into shops or meet with friends...surely the school doesn’t impose this? It’s not like you are shielding, & I think meeting friends outside is safer) & a bit of normality at the weekends would do you good, perhaps? I took early retirement, but had an excellent final salary pension, but there’s no way I could wire full time. I was diagnosed 18 months ago & I’m finding life much harder now& am not as lively or pain free as I was on 8-15mg! I reduced to 3mg, had a very bad 3 weeks, consulted my gp &am now back at 5mg, feeling a bit better. I’m still overdoing it, but suffering from it & trying to learn to pace & rest! Sending hugs, S xx

Pippz20 profile image
Pippz20 in reply to Pixix

Sorry, I meant that I can’t walk around long enough to go shopping or go away for the day with me friends as I can’t do the walking, this is also making me feel isolated. Not due to COVID!Thanks

Pixix profile image
Pixix in reply to Pippz20

Oh, I’m sorry! Lots of us are still being very careful, & I thought that’s what you meant! Try something simpler like meeting friends outside for a drink in a pub garden, or mert your friends for a coffee & cake at a cafe...they can do the whole day shopping but you can’t manage, but you can meet them for the ‘social’ bits! Think round the problem & adapt...& I’m sure your friends will be happy, too!!

ncfaaeos profile image
ncfaaeos in reply to Pippz20

Your line manager should not be in such a position, in my opinion. As you have always been a busy person, the fact that you are now feeling it difficult to cope must make it clear to the management that there is really something wrong that needs to be taken seriously. I wish you all the best.

You really need to have that difficult conversation with the head teacher or whoever deals with personnel matters. You simply can’t go on the way you are. Have a good think about whether there is a change of duties that might help you to manage. Do your duties always require your presence in the school?We had a forum member whose head teacher let her sleep on the sofa in his study every lunchtime - it really made a difference. Have you considered early retirement on health grounds? I was in the Civil Service and these were the most advantageous terms to retire on. Have you looked into any benefit entitlement you may have? You need to communicate to colleagues just what you are up against. I honestly can’t imagine coping with your job and our diseases. People often assume that we are ok because we look ok. You need to explain and get people on side. Have you done the financial sums to see if you can reduce your hours further? Would a job share be an option?It is difficult to look after your health when you are continually doing too much but are you sure that your Pred is at a sufficient level to manage your symptoms?

Are you sure that you can’t sit down all day? It may just not have been done that way before. What would happen if a wheelchair user had your role?

Just a few ideas to begin with. Your employer has a duty of care towards you. As a disabled person you are entitled to reasonable adjustments to enable you to stay in work - hours, job description, specialist equipment, health breaks. If your employer doesn’t know that you are struggling they can’t help you.

Talk to your doctor as well. You seem to be quite understandably depressed because you feel powerless. You will feel better when you take charge of this situation. I really feel for you. I would not have been able to continue with my job with PMR. I am older than you and I had taken early retirement. As it was I had to give up voluntary work and any kind of social life.

Get a cane. A visual sometimes helps those too ignorant to recognize invisible illnesses.

… and I wonder how many lessons your line manager actually teaches? See your union rep. ASAP! Good luck!

Pippz20 profile image
Pippz20 in reply to Mrsd12f

🤣🤣 Not many! Like my hubbie says I need to make sure I let them know how I feel. I am a great one at soldering on but am beginning to realise that you can’t do this with PMR! Xxx

cycli profile image
cycli in reply to Pippz20

presume you mean soldiering Pippz20 unless you really are a plumber 🤣 just love some typos. On a serious note though your school has behaved atrociously. We all feel at our lowest ebb when this condition takes over as it has with you and the willpower to stand up and be counted just withers away . I'll wager every single person on this forum has felt that miserable depression at some stage. You MUST make them aware of your present physical state, and your mental state as a result of their total insensitivity to this disease. They are ignorant and you need to educate them as to its effects. Go for it and good luck.

All the excellent points made in the reply by Sheffield Jane are worth following up. U need to take action to make your life bearable and manageable, but clearly you have never felt less able to do this precisely because u are ill. Catch 22. So the first change to make is in your reluctance to “put yourself forward” or ‘be a bother.’ Be a bother! See your doctor and your Union rep if u have one or HR if u haven’t. Get them to speak for u. If u get upset, ask a friend to come and speak for you. Take any and all help u can get and u WILL get in a better position eventually where u can cope. It might not be in the job/position you are in now - life changes sometimes for us all - but when u are less stressed and tired, and the medication can work, then u will begin to recover too. Take the first step tomorrow. See dr or HR or Union Rep. let us know how u get on. Very best of luck. Carrie

Pippz20 profile image
Pippz20 in reply to Carriemetz

Thank you Carrie. I think I will speak to the head first as she was very supportive whilst I was ill. If she can’t help then I will go to hr xxxx

Before PMR I used to say yes to everything and was always very active. I discovered that with PMR I was not able to do some things, but people still used to ask, expecting me to leap into action and slowly I learnt to say no having said yes at the beginning. I am still working but not half as strenuous as in a school.

Hi Pippz, we have a number of teachers on the forum, both working and having taken early retirement because of their ill health, including me, and I'm sure they will also be along with they experiences. I think most things have already been said. If you are in a union, speak to them ASAP. If not join one tomorrow and explain everything to them. The school, whether they like it or not, have to take regard of your present health condition. If coping is becoming really difficult then another period of sick leave may be neccessary with a phased return to work on a plan worked out with you and school/HR/Union. Good luck and hopefully you will get some understanding and sensible support from the powers that be tomorrow.

Hi Pippz20. I'm 63 so a little older than you, but was diagnosed in May 2019. I worked in a primary school with Early Years and after going on long term sick leave post diagnosis, I attempted two returns to work. Unfortunately both failed despite phased returns, reduced hours and change of duties. The problem was that during my sick leave my health improved but only because I had the time and freedom to rest when I needed to and really focus on my health. As soon as I returned to work, the pressure and extra physical exertions eventually took their toll again and my PMR symptoms returned and I had to increase my steroid dose. I'm now in the process of taking medical retirement as I've realised I can't work effectively and take care of my health adequately too. This was a massive decision for me to make as I loved my job and was determined to carry on. It wasn't to be though and I had to do what was right for me.Many people manage to work with PMR but they often have to 'tweak' the work regime in some way, or even change jobs.

I was very lucky in that my Headteacher and SLT were incredibly supportive but your Headteacher and SLT really need to understand that this is a serious systemic illness, it's a chronic condition and the steroids themselves can make you poorly too. The fact it's enough to grant me full medical retirement proves that!

Try not to feel too despondent. You've had some excellent advice from others and there'll be a solution for you somewhere. Just might take a while to explore all potential options and make the necessary changes.

There's some great advice here.

I'm working but have had to get occupational health involved to ensure I get an hour's break and scheduled breaks every day. This adds up to a reduction of 5 hours across the week and it has made a huge difference.

You don't say if you work in an academy or council school - if council, you should have access to the employee healthcare/occupational health team. Make the phonecall because it sounds as though your manager won't. They have an absolute duty of care to ensure they make reasonable adjustments for a long term medical condition. It's hard when you don't feel up to it but please make that first move, enlist help if you can.

Pippz20, there is not much more I can add to the excellent response you've had to your post except that you have my sympathy for the situation you are in. I'm a long-retired teacher (and school union rep) from the job I loved when there were fewer pressures on the profession and much less interference from the powers that be. I remember struggling on when poorly but can't imagine doing that nowadays and with a chronic disease like PMR. You are a human being, not a machine and it's dreadful that so few allowances are made for you.With your experience of planning and preparation I'm sure that you'll be able to gather your thoughts and present your case clearly to your head. I hope your meeting goes well and in your favour as you are entitled by law to much greater consideration. I truly wish you well and look forward to hearing some better news.

A big thumbs-up to your supportive husband👍.

You've already received so much great advise, just wanted to chime in to say staying strong also means doing what you need to take care of yourself, and to realize you're not alone. The diseases PMR and/or GCA and the effects of prednisone are so misunderstood by many physicians and lay people. That ignorance makes our life harder. I've also noticed many sufferers on this forum were extremely active people prior to their diagnosis which makes it even more difficult to cope with the effects of the disease, medication effects and needed life style changes.

You can and will get through this, and there are a lot of knowledgeable compassionate people here to help you. Sending best wishes!

Hi ,your not moaning your just telling it as it is atm! I know the feeling , you feel in Limbo .My journey has and is a long one . I was asked out to an event last week, i made an extra effort with make up clothes etc, i had a great time , but felt so lonely .I really enjoyed my day but was so hard and different , i joined in as much as possible , but was in pain and going through the motions . People who had not seen me for ages said i looked well ! If they only knew . My daughter was great and could see i had had enough, they brought me home, before Pred i would have been up for going fora drink in a nice little pub etc. Having to get used to a new way of living is hard . I now take each day as it comes ! Dont worry things will get better, it just takes its time . I pick where and when i go now , it just depends on how i am.My good friends come to see me and most get it! Hope things will soon start to get better for you, hang on in there .xx

Lots of sympathy for you Pippz… so much on your plate… You might consider showing / printing PMRPRO’s excellent pinned post explaining PMR and GCA. Because we don’t necessarily look ill many can dismiss this nasty condition and the effects of the meds.I would also strongly support advice re involving your union and the Head. I would also advise to carefully log/ record each interaction.

Thank you so much everyone for your advise and wisdom. This forum has been a lifesaver for me and I am so grateful. I have e mailed my line manager to ask for a meeting and will take it from there.Have a lovely weekend everyone, and thank you again xxxx

Oh bless you, My heart goes out to you, it’s very difficult as everyone tells us fellow sufferers we look great, little do they know.

You must inform your work that you may look ok but deep down you have this illness and it’s only the pred that gives the impression of health, explain you need more help and rest time.

Take care.

Sending you a big hug 😍.

Xx

Pippz, , some great advice here. I’m also a retired teacher and know all the pressures that come with the job. A good start ,as you said , would be to talk to the head. Does he/she understand the nature of this illness. When I told my friends I had PMR , most had never heard of it and were constantly saying how well I looked. This disease demands that each day is managed differently , some days we need to rest and do nothing at all. Please let us know how you get on, thinking of you .

Iv found that people just don’t get and I get they don’t get it. I didn’t until I got pmr. But what I do now is screen shot really relevant stuff from here post on my socials with little remarks I make them lighthearted and send to friends and family so they are slowly getting it. Without this group I would never have understood the pmr thing. I still don’t myself. I look in the mirror and think you look ok. What a complicated disease. You will get your own head around it and eventually so eill those that matter to you. I’ll post a pic that I think is a good representation of pmr. Take care pippz20

What dose of Pred are you on?

Hi Pippz20. You've received some great advice. I have no idea where you live, however, as a retired Human Resources Professional in Canada I know that all employers have a duty to accommodate whether it be providing medical leave or accommodating a gradual return to work.

You also mentioned being achy at the end of the day. There is nothing on your profile regarding your history with PMR. Can you tell us a bit more about your starting dose, how you reduced, the dose at which the massive flare occurred and your current dose.

Pippz20 profile image
Pippz20 in reply to nuigini

Hi started on 15mg now down to 6mg. Did get down to 4.5 when I had a flare up in March and went back to 8.5 to get it under control. Reducing at 0.5 every 5 to 6 weeks.

It’s a tough road if your are working with PMR. Many forum members have already provided you with great guidance.

I was 55 and had just retired early, when PMR symptoms hit 18 days later. I suffered terribly for almost 6 months before being diagnosed. Those months were the most difficult of my life! I isolated myself from others as I just did not feel myself at all. This lead to loneliness along with my fears for the future.

So I get how your feeling given your circumstances. Not sure what government supports are available to you, however you may want to investigate a leave of absence until you can settle in at a dose that manages your symptoms. Until the inflammation is managed, the resulting pain and stiffness will shadow other efforts to live a “new normal”. The mental impacts of this condition, or being diagnosed with any chronic illness, is mighty indeed. Essentially we are grieving the loss of our life before PMR. I was in denial, angry, depressed and promised myself I’d make changes just to rid myself of the pain.

Coming to a point of acceptance really helped me shift into a better place. I made adjustments as need be, and learned what I could control….and let go of what I couldn’t. Rely on those supports around you to get to a better place! I will say 3.5 years in and I’m doing much better than the beginning of this journey.

Keep us updated and remember we are always here for you.

Pippz20 profile image
Pippz20 in reply to PMRCanada

Thank you for your kind words. I think the mental impact of PMR is almost as bad if not worse than the physical, particularly at my age and previously being so active: my favourite hobby was riding, now I struggle to get upstairs so no chance of me getting in a horse any time soon! Xx

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Pippz20

But you will again one day. You don’t have to leap on it like a bare back rider, there are easier ways of doing it!

Hi yes I too feel like that most of the time - if someone could tell us if and when this disease went away and we would be free of pain and misery, I feel we would be able to cope better. I would concur with what others have said 're work - HR should be referring to occ health and looking at reasonable adjustments- just beware reducing days further - I did that and found it more stressful as the responsibilities remain the same and you never really switch off

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRfacebook

If - in the vast majority of cases - it does....

When - bit more difficult as its a self limiting disease - so it comes when it want, hangs around along as it want and then goes when it feel like it ! Not scientific, but true nevertheless.

Free of pain and misery - certainly can reduce those to an acceptable limit if managed with correct dose, and an adjustment to life (where and when possible).

PMRpro profile image
PMRproAmbassador in reply to PMRfacebook

I'd say I was free of pain and misery - the PMR itself doesn't get me down particularly even after all the years I've had it - and much less so since it was diagnosed and managed well with pred. I've had my share of bad bits but they have always passed sooner or later. I have had worse things to face than my PMR.

Sounds terrible! You might find this helpful:citizensadvice.org.uk/work/... example:

There’s no limit on the kind of changes employers have to make, but it could include:

changing hours of work, permanently or for a short while if you’re going back to work after being off sick

changing your work duties - like reducing your workload if you have work-related stress

I know it's not easy for teachers to work reduced hours - I used to be one myself - because of the disruption to pupils, but I know a teacher in a comprehensive school who has recently had much more help from her school with a phased return, even though it's already gone on for 18 months.

In the meantime - I think you're a heroine!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Sharitone

Just to let you know link not working - tried couple of times, both from forum and direct from email notification, get this -maybe my iPad -

Pnf
PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Not working from my computer either - at least, not from the link here. Haven't tried from the email.

citizensadvice.org.uk/work/...

Sorry! fingers crossed!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Sharitone

👍

PMRpro profile image
PMRproAmbassador in reply to Sharitone

Works for me now.

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