Living with giant cell

[Deb61]

No longer able to work since giant cell 1 year ago is this normal?

[MollyBloom]

Hi,

Sorry to hear that. From what I've read on here people vary in the way their symptoms affect them and whether they can work or not. Probably the majority had retired anyway but for those who haven't, I imagine the type of work they do also affects the ability to work. I'm sure others on here will advise more informedly than I.

My experience is this: I have PMR and GCA and had 2 jobs, the main one was in a demanding stressful role with some physical elements to it, the other is self employed mainly home based writing work. Eleven months down the line from diagnosis, I have not returned to the main job and have agreed to leave as I know I cannot do it. I have kept the other one going and that is much easier to do because it is mostly for me to pick and choose when I'm able to work. I'm much better than I was to begin with, but still don't move or think too quickly in the morning and would really struggle to leave the house by 8 am. I certainly couldn't keep going all day and without even having a lunch break (that's working in social care for you these days!), be relied on to make frequent quick important decisions throughout the day, manage problems, and I'm still prone to falling and dropping things so I wouldn't want to be constantly going into unfamiliar surroundings and moving people who I might drop. I'm just generally much slower and need to sit down a lot. Avoiding stress is a major factor also.

I know that other people on here have had to give up work also, or been off for a long time so you wouldn't be alone. Sorry it was such a long winded answer!

[Deb61 in reply to MollyBloom]

Thanks for your reply so nice to know I am not alone!!!

[Gosingen]

Hi Deb51

Whatever normal is. I've got PMR/GCA (seven years) and I had to give up work two and a half years ago. We're all different and I'm sorry to read you can't work anymore. My life is now a new normal, I take one day at a time because I never know quite how I'm going to feel. Some days are really good, some days are bad. Nature of the beast I'm afraid, but keep smiling and try to avoid stress if you can, never helps with our condition.

Wish you all the best.

[Deb61 in reply to Gosingen]

Yes I am sure finding out about the stress and trying to learn how to pace myself

[Gosingen in reply to Deb61]

Morning, it takes time to adjust. Don't admonish yourself. Some stress we can obviously avoid, some not... for me the trick is to somehow plan that when I know a stressful situation arrives I make sure that I take it a lot easier and do what I know is therapeutic for me. It's a new journey for sure, somethings I don't like it much, but then again there are times when I think I'm lucky because I don't have to rush around like an idiot like it was when I was working. Hope this makes sense (it's still early and I'm not sure I'm quite awake yet - lol).

You will, I'm sure, in time get used to your new normal and hopefully embrace it too.

Have a lovely day.

Yvonne.

[Deb61 in reply to Gosingen]

Thanks Yvonne planning ahead makes sense and just the thought of running around like an idiot when I was working was so true just the thought of that makes my hair stand on end so I guess I just need to give myself an adjustment period. Thanks for the encouragement. What is very therapeutic for me is the little kids. I will share one little encounter with you cause it is soooo cute. My four year old grandson had a glow stick that look like a shamrock and I explained that is for Irish people. He looked me right in the eye and said "I am not Irish I am handsome". I have seven grand kids and now that I have time I am keeping a record of all the funny little one liners that keep me going....

Hope this gives you a laugh......

[Gosingen in reply to Deb61]

Thank you Deb - it sure did, seven grand-kiddies, lucky you, I have two and that's wonderful, they're the best and they will keep you going. Mine sure do put a big smile on my face.

Look after yourself.

Yvonne

[Gosingen in reply to Deb61]

Back again

Just saw this quote, liked it... hope you do.

Whatever happens to you, don’t fall in despair. Even if all the doors are closed, a secret path will be there for you that no one knows. You can’t see it yet but so many paradises are at the end of this path. Be grateful! It is easy to thank after obtaining what you want, thank before having what you want.

~ Shams Tabrizi

[jinasc]

Hi

Do you have PMR alongside the GCA?

What sort of work did you do?

[Deb61 in reply to jinasc]

Not yet!

I work in the social service industry with very high risk youth and I love my work but just can't seem to get better enough to go back to work.

[PMRpro Ambassador in reply to Deb61]

If it is anything like what my daughter does then I wouldn't want to do it with GCA and being on pred. Her job requires a major degree of patience - pred doesn't help that! - and the stress she experiences with her 3 high risk house-inmates would definitely not be good for anyone with GCA even if there was no PMR involved which makes the physical aspect perhaps more tricky.

[Deb61 in reply to PMRpro]

Yes it is very tricky for sure my job currently is setting up education plans for about 45 very challenged youth, hire and supervise the tutors working with them and overseeing all the reports done monthly. It is a very big job and I already had MS, fibro and chronic pain from an accident five years ago. Then I got the GCA and diabetes as a result of the prednisone so I have nothing in reserve anymore. Being on this site helps me to be more accepting of perhaps never returning to work and working on my new normal. Being on this site has really helped me with all of this as I do not feel so alone......

Thanks

[PMRpro Ambassador in reply to Deb61]

The acceptance bit is a major hurdle - but a very important one for long term happiness.

[evafel]

Me too, for two years now.

[karools16]

Hello Deb61. I started GCA when working as a live-in carer, 10 years ago. I came to this country to work, and thought I would be working until about 70. Am now 69.I couldnt go back to the job, or any other, as soon after, heart,kidney, and now lung problems started.I was, at first, devastated, but you just have to do whatever your health allows.There is a different normal for us all. Best wishes to you.

karools16

[Deb61 in reply to karools16]

New normal sounds like something I have to really challenge myself with. Thanks

[lesley2015]

Hi Deb61

I worked for the first year - taking two separate spells of a month off - but this did not help. I am now starting my 3rd month off and at the end of August will make a decision to either take another 3 months or actually resign. Work are not being helpful, it is a stressful role, i have finally reduced steroids down and don't wish to rock the boat as it were having had two previous flares while working.

SO I think most probably, unfortunately, yes it is normal.

[Deb61 in reply to lesley2015]

I also am afraid to rock the boat and stress of getting up in the morning is tough enough lol but true and I am down to 5mg of prednisone after almost a year, have prednisone induced diabetes, MS, fibromyalgia, chronic pain from a nasty car accident 5 years ago lost my mom to cancer in October and dad to a brain injury and Alzheimer's it has been an ugly year for sure. BUT I have 7 beautiful grandchildren who are very healing to be around as long as I have help. Sooo reading all of your posts is helping me to see the silver lining and get the message time to let go of my job!!!

[Anna135]

I had to stop working after I got sick with GCA, the fatigue was overwhelming and my job although part time had been quite physically demanding. I've been on prednisone over two years now and have spent the last year slowly training myself in web design/development so that I can get to a point of starting my own business from home. Still very fatigued though, but working from home should be doable.

[Deb61 in reply to Anna135]

I definitely get the fatigue part but thought it was just me as docs don't really give much in the way of what is normal or to be expected although I have a great GP and rheumy and I have always wanted to write so who knows.....

Thanks for your post

[PMRpro Ambassador in reply to Deb61]

I don't think there is a normal/usual. The majority of people in the UK with GCA have already been at or very close to the retirement age. Now the retirement age has risen to 65 and rising it will be a different matter as increasing numbers of people in their 50s and early 60s are faced with it.

But no - not just you! It's difficult to say which aspect is worst - that depends on the job you do. Brain fog and mood swings would apply for your job maybe but the fatigue hits at any moment - and when it hit me the other evening I was sitting in a restaurant having just eaten dinner. I thought I was going to topple sideways off the chair! And no, I wasn't drunk!!!!!!

[Deb61 in reply to PMRpro]

Love your reply. I really thought I was losing it the other day. I had not done much my husband does most everything but I went to visit my grandkids who were very happy to see me but after an hour I just was suddenly sooooo tired I had to go home. But not having met anyone else with GCA I keep thinking I am a wimp and if I just push myself I will be able to push through it. When I hear your story of fatigue hitting at any moment I feel normal if you know what I mean. It has taken my family a long time to understand this disease.

Thanks for your encouragement!!!

[Deb61 in reply to PMRpro]

I am currently on LTD and they are forcing me to go on CPP but will continue to supplement my income till age 65 and I can continue to contribute to my pension. I am from Canada. But I am looking into all of this and have a lawyer who is very knowledgeable who is helping me.

[Runrig01]

I have had PMR for 5 year, and GCA 3.5yr (only officially diagnosed 18 month ago). I was only 46, when this journey started, I work as a nurse in a busy orthopaedic ward, which can be quite physical. I have had to take 3.5 month off last year because the head pains became very severe, that's when I was then diagnosed. I have only taken a few days off here and there for flare of PMR symptoms. It is challenging working with these illnesses, but occupational health have been very supportive, and given me exemption from nights. I also only work a max of 2 long days, then have rest days. I am fortunate that my ward manager, and all the team are very supportive, and I couldn't do this job without there support. I have recently had a few stressful shifts being the only trained nurse for a full ward, which has resulted in my neck and shoulder stiffness and pain returning with avengance. This is concerning my manager and we are in the process of amending my shifts, as there is no support from matrons to find staff for these shifts. I do sometimes worry if I can carry on for another 4 yrs when I can take early retirement. Working in the healthcare environment has the advantage that staff do understand, I realise in other settings because this illness isn't visible to others that they may not get the level of support I get. Good luck with your recovery. 😀

[Deb61 in reply to Runrig01]

Yes my work has been pretty good but I just can't get it together to go back as I also have a few other autoimmune disorders which I managed for a number of years until the addition of the GCA a year ago which has just thrown me and I am sure I will have to take an early retirement as well and you are right it is not a visible illness but I guess when I get fatigued I look pretty bad and lost most of my hair on metho and just too tired some days are better than others..... HOWEVER my nail person told me I looked pretty the other day so I know I must have looked real bad most of last year...... I do have a sense of humor that goes a long way although when I lost most of my hair which was very thick and luxurious I admit looking like a cancer victim was kind of the last straw and I pulled in to my shell for quite a while till summer when I found a really cool hat to wear.......My hair is starting to grow back....

[PMRpro Ambassador in reply to Runrig01]

Runrig: Can't you get retirement on health grounds? Then you wouldn't lose as much of your pension - David lost 5% per year for going early (i.e. after 55 and before 60) but I don't know if the ages of changed.

[Runrig01 in reply to PMRpro]

Beiing pensioned off on health grounds in the NHS is really difficult. You have to show you would be unable to do any job. I am in the special classes so can retire at 55 without penalty and then return to work a day or 2 a week as a staff nurse rather than a sister. If I went part time now it would have a big impact on my pension. I get by at work most of the time, although a stressful shift being the only trained nurse for 20 patients triggered a flare. I see Sarah next month and she did discuss changing Azathioprine to Methotrexate, as I'm still having GCA flares, mainly tongue problems but also head pains returning with some scalp tenderness, although not as severe as last year. We are both worried though as when I stopped Aza for 12 days 18 months ago it triggered severe head symptoms, but it is not helping pmr symptoms, and GCA symptoms keep creeping back. My pulsatile tinnitus has retuned but rather than being quiet in the back ground, I'm getting 5-10 sec bursts of really loud tinnitus. It's never ending 😏. Hope you are well xx

[Deb61 in reply to Runrig01]

I think you are in a great position and it is wonderful you are still able to work a day here and there. I am working on a few ideas to give me a focus. I have a lot of expertise in the areas of working with families and kids and teens with special needs and I may look into doing some consulting. My problem though is I have too many health things going on at the same time. MS, FIBRO, GCA, LOSS OF VISION IN ONE EYE(although not total loss but am not driving yet) and diabetes driven by the prednisone, and chronic pain from injuries suffered in a car accident five years ago. The GCA came on a year ago when my mom was actively dying of cancer so I really wonder about the connection of stress and CGA.

I also tried the metho but I got really sick with it and most of my hair fell out now I take plaquinel which I seem to be tolerating and have dropped the pred over time to 5mg so we will see.

I wish you the best and it sounds like you have tremendous support from work!!!!

[christine2715]

I am 63 and was diagnosed in April. I was doing three small part time jobs and I felt it was better to give them up. I just don't know from day to day where I will be with this illness. It makes planning very difficult. It is very hard to come to terms with the fact that one has a life changing illness. I have recently discovered I can get support and free counselling for six sessions via the GP surgery and Wellbeing. I think they deal with the emotional side, whether you should have physio and weight loss. Is there no way you could work part time? I think everyone is different and you have to make choices. Very best wishes.

[Deb61 in reply to christine2715]

I am 61 and hoped to work till 65 as I love my job but being the bald fat lady now is just too humiliating. (LOL) My black hat and cool cloths help.... I have three daughters and 7 grandchildren who refuse to let me give up...... they just show up and I have to give up my pity party as the little ones are just tooo cute for words..... there is also Netflix but it is getting old now after a year but at least I am not in the hospital as I was at Christmas..... and you are so right you never know form day to day where you will be at but honestly for a long time I thought it was just me and I have not met anyone else with this disease. I also have diabetes form the prednisone, fibro, MS, serious sleep disorder and lost my mom last year to cancer and dad to Alzheimers......BUT I really feel this site will be a great support for me and I hope to be a support to others!

Thanks

[Hidden]

Hang on in there Deb61 , your daughters sound a great supportive bunch , do look at this site as a second family , there is great support and knowledge , there is always someone here for you whatever you are going thru .

[jinasc]

If any of you have Human Resources personnel available - talk to them and tell them exactly what you have that it is an auto-immune illness. As employers have a duty of care maybe, arrangements can be made to suit your circumstances.

Two or three people that I know did this and there were accommodated.

pmr-gca-northeast.org.uk/we..., then click on Tim's story re benefits.

[Deb61 in reply to jinasc]

Yes I have thought of that also I am having lunch soon with my boss. The problem where I work as it is non profit there are no part time workers...... but one never knows till they ask.

Thanks