Hey, this is feels like a last resort for me but if I don't verbalise it I'm going to go mad. I'm at a loss and have no one to talk to really.. I have RA and under active thyroid (and a few other things) but it affecting my work and general attitude. I'm being seen as lazy and I think that annoys me more than anything else. I've been working 9hour shifts, getting 1/2 hour break and 5 days a week it's ruined me, but its my only option, i'd leave if it was feasible but with rent and bills and stuff it won't work. Can people please share their feelings/stories of dealing with this if you have? What you did? Is there anything I can do!?
Thanks
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Bethrose91
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Your not on your own! But those hours plus stuff at home is lazy? Who said that? How does that happen? Course your not , you have a long term chronic illness.
I talked to my manager and got booklets first from NRAS on how to talk to your employer and a couple about RA I left round the office. Being in the NHS I knew they couldn't sack me for it tho!
Then went to occy health who were amazingly helpful after I quoted what was the disability act to them ( they knew it anyway) . They got me trolleys. Ensured I didn't have to work late etc.
Hang on in their but for me getting help was the best.
If it really is the only feasible thing then hang on in there. Otherwise take a long, hard look at your finances and any options if you haven't done so already. Allanah's advice is excellent. But if you can completely change your life for the better don't be afraid to do so. You deserve the best deal possible ... at work, but also in life in general. I know I ploughed on at work too long, thinking there was no alternative. But really I was avoiding thinking clearly about it all.
So sorry you feel alone with all of this. Please, at the very least, keep posting & expressing how you feel. Work + RA is a tough number & we all understand that. Not having anyone to talk to is all too common, you're not alone with the challenges you face and neither are you the only person who feels isolated. Posting here will at least help with self-esteem I think. And could help even more.
Hello, I'm really sorry things are so difficult at the moment. These illnesses are awful in themselves, let alone when you feel alone and unsupported. We're all here for you though, don't forget that! The advice you've already been given by others is brilliant and I would echo that. When I got diagnosed and started on all the medication I explained to my manager about the effects it could all have on me and we discussed ways that she could help me. For example im allowed to work from home sonetimes and work got me a supportive cushion for my office chair, and various other bits like that to make me more comfy. i too feel a huge pressure to carry on working as normal, but your health really is more important and if things need to change so you can stay as well as possible then it might be worth really looking at your circumstances (as advised) to see if anything could change. If there's things you can think of that your work can do to help you i would talk to them about it, you deserve support x
Don't fell alone, there are others here that are on the same journey as you and understand how you feel.
I too felt much the same until I found this website, the advice and support here is invaluable.
I work long hours (12 hour days/nights) and don't get any breaks. Speak to your boss as they have to make reasonable adaptions for you to keep you in work. Access to work can help to, they will do an assessment of your work place, offer advice and in some cases will help with costs to make changes. They helped me with an adaptive keyboard and a chair that is much more comfy and supports my joints.
Take time out to see if there are other modifications to your life that will reduce the stress and financial burden, you may find just reducing some of the hours would help, or depending on your job your boss may be aproached about flexi time this way you can start a little later when the stiff joints ease off a little. It's all about doing what is right for you and your health.
I often almost fell at sleep throughchronic fatigue.I had to push myself harder & harder to stay in one place ..bit still HR did not appreciate my chronic conditions .
I was made redundant going from a respectable salary to virtually nothing - but hey ho the stress relief was amazing !
A complete rewind of life's perspective.
Close to going to the food bank pride stopped me.
Taken a while to get ESA/ low rate care & standard mobility but has all helped.
Mortgage co. Has worked with me once they realised I could not physically/mentally move .
Go to benefits & work you may be able to get ESA & reduce your hours ..plus contact any local charity with an advisor that will come to you & is up to pace with regulations .
PS. Once on PIP/ESA. You can then get relief from council tax & rent assistance depending on whether you have a partner/ husband . I have neither & my sisters live quite a distance away.
Hi Bethrose91
I know how you feel , I've been off work for 11 weeks now . I've got RA in my lower spine and suffer with depression , I've never been off sick in my working life so I find it hard to get motivated . What I tend to do is bits at a time, which keeps me mobile . It frustrates me as I want to get back to work because of I have a family to provide for . So I admire people who carry on with health problems , having someone to talk to is an option . Don't let people get to you , how would they feel eh !!
I get your situation. I have been the breadwinner for my family for many years. My husband has severe anxiety issues but refuses to seek help & therefore doesn't work & doesn't get any benefits. Whole other story.....
I went undiagnosed & untreated for a long time - really struggled & felt like I was going crazy.
With treatment, things have been better, mostly, but I get soooo frustrated when, from experience, I know that my condition is starting to slip & the doctors won't listen, so I have to slide back to the bottom of the hole again before my treatment gets changed. I've had to dig myself back out several times & never get back to being as well as I was before.
I can't really offer any more advice than what has already been given. When things are bad, I put my head down & just plough on at work the best I can & let everything else go. I tend not to take sick leave. If I'm too sick to go in one day, it's really hard to see that I'm well enough to go the next. (For a few years, I worked in a job that had no sick pay - that really focuses the mind!) I utilise all the energy saving strategies I can, even when it feels like I don't have to - cook sitting down, shower sitting down, no ironing etc, etc. I prioritise everything. When things were at their worst I made choices between things like eating a meal & showering because I didn't have energy for both. (Showering wins!) Days were turned into 15 minute chunks of time that I just had to survive, one at a time. It's certainly not how I would recommend living, but I suspect a lot of people are or have been in the same boat.
Are all your health issues being fully treated? The one thing I tend to find does get some action out of my rheumatologist is me saying I think I can't work any more.
Keep posting - I think even just letting it out helps & if anyone at all can understand, it's the people on here.
The underactive thyroid is going to make you feel sluggish so I would think that needs sorting out quickly. Hopefully your energy will perk up then.
It is so important to be able to let your feelings out, even it if is only through this page but I do hope you have someone in your life who would listen to you. It is so hard carrying a load without someone with you to take some of it on their shoulder. You are in my thoughts xx
Can't add to the excellent advice already given, just wanted to emphasise that there is lots of support here, we all know about fatigue. You need to sort things out at work, but most importantly, you need to look after yourself. Without feeling guilty!
Thank you all so much. I've been working in hospitality with a younger team and they have no understanding or patience! I tries to explain bit because I'd had so much time off I had to have an attendance review but because of what it was they couldn't get rid of me... I've looked at every option with work, looked at outside support but at the moment theres nothing I can do. I'm trying to get into other employment but finding it pretty tough as all my experience is hospitality.
My partner has been an absolute dream with taking me to hospital, getting my tablets and all that and he tries to talk about it but its usually just 'chin up, could be worse' I know he's trying but.....
With regards to PIP I've been told I wouldn't qualify because I am still somewhat mobile and can use my car.
I'm getting treatment for everything, but because the RA is worse in my knees/ankles its not great and I can't really walk for more than 2 hours without getting achey!! Which at 23 sucks.
Thank you all for the great advice and just having so many people respond! I've been looking for local support groups but I think this will be better. It's much better to talk to people with similar issues and how they deal, I can start re-planning my life
You don't have to be immobile to qualify for PIP. There are 2 separate components - daily living & mobility - & 2 levels. You might qualify for the daily living part even if you don't for mobility. You can self-assess here:
Thank you, I'll have a look when I can get on my laptop. I've got to wait for another appointment to be given to me, I'm still waiting for my letter!!!
You need to talk to your GP if you have not done so already.
It sounds like you are suffering an Anxiety or Depression. So you may need something to lift your mood.
Sad to say I suffer reactive Depression caused by my PSA. Have suffered the depression now for thirty years and I become an OAP at the end of this week so I would recommend you talk to your GP as there are means of treating your problem and possibly a Pain Clinic may also help you.
Many patients can get over this problem and some have to tolerate return symptoms throughout there life. Sometimes like me I will be taking Antidepressants for the rest of my life.
I have depression and anxiety, have done for ages now. I've always been wary of tablets for it because I saw how my dad and mum were on them. I have tramadol for pain and steroid injections also. I have spoken with my GP and things are in the process of working out what will be best for me, thank you though
Whenever I've spoken about depression my doctors have been reluctant to prescribe meds. The quite reasonable comment seems to be that its not clinical depression because in the state I'm in its an understandable reaction. So my only solution is to get decent treatment. And to try to distract myself from pain and immobility.
I think I was in the same boat a few months ago; was working in hospitality in a young team who had no understanding at all. I was newly diagnosed at the age of 26 and my supervisor kept saying for months that if I am sick I shouldn't work (I was absent when I was diagnosed for 2 weeks and then her only problem was that I worked slower than others).
As I was at college and had to pay my tuition fee unfortunately resignation was no option that time. Then they just reduced my working hours without asking and I couldn't do anything about it, so I had to quit eventually. After that it was still difficult to get on in my new job, especially because I am still not able to work more than 4-6 hrs, I got way too exhausted mentally and physically in the last few months.
Don't know if it helps but try to ask your local CAB; in my case they were just brilliant. I haven't done my research yet but I think ESA should be available if you struggle at work.
All of us need some rest and we are dealing with a chronic disease. I didn't want to stop, because I have never been unemployed and thought it is a shame if I don't work. But in the reality if you are exhausted, you cannot do your best, even if you really want it.
I was the same in work, had two/three weeks off because my knees were so swollen I couldn't even get to the bathroom!! Thanks to everyone on here I've actually found some good stuff online and am in the process of applying for esa if I get it it's a bonus! I'm applying for new jobs aswell, but because all my jobs have been in hospitality I'm struggling to get anything that's in anything else!!
Its good to hear about people getting help and fighting their way through. I'm very lucky, my husband is very understanding, and does a lot to help. Sometimes I think he does too much, but I'm not complaining.
trying to work and to live with this chronic disease is difficult. I struggled with quite a demanding job for about ten years from diagnosis, but was lucky enough to be of retirement age with an occupational pension and I know that, although I made the payments over many years, I'm very lucky.
You commented about depression and not getting prescribed an antidepressant (which is RIDICULOUS, btw). I too suffer with it. I take cymbalta which treats pain AND depression. Maybe you could ask for that? It's a proven fact that chronic pain causes depression, so not prescribing an antidepressant seems ridiculous to me
I'm not sure if you're in Canada or US, but have you applied for disability? I feared applying, but it was one of the best things I did.
There's options for treating your fatigue too. I've taken Nuvigil (provigil is cheaper, but gave me headaches), phentermine, or adderol. My pain dr got me those (not all at the same time lol).
You don't have to suffer as much as you are. Even if you continue to work, there are options for treatment. Please fight and try for them. You definitely deserve it!
Hang in there, know you're not alone, and fight the good fight!
Ps. Don't be afraid of pain meds. You'd be amazed at how much better they'll make you feel. Chronic pain causes things like high blood pressure, depression, and many other things. Just because your parents have had issues doesn't automatically mean you will too. Just use your best judgement and make sure you truly need them before you take them.
Wishing you all my best,
Hillary :~}
Pps. I have RA, Ankylosing spondylitis, fibromyalgia and a bunch of other bs that comes along with it all lol ;D
Have you looked on Health Unlocked's Thyroid UK website? You might find that helpful for your under active thyroid. That must be making you feel dreadful too. The good thing about here (and TUK - I've got thyroid problems too and now got RA to go with them) is you get so much support you need never feel alone again.
What drugs are you taking for your rheumatoid? If you keep getting lots of swelling in your knees and ankles, it sounds like you need an assessment from your rheumatologist. Once you get the combination of drugs right and the disease is under control that will make a huge difference to how much you can cope with in your life.
Amitriptyline is an anti-depressant and is prescribed for pain too.
I wish you all the very best and hope you can find a way forward. I was 29 when I was diagnosed with aggressive rheumatoid, you don't expect all this when you are young but this disease can strike anyone whatever their age. You sound a determined lady and having a supportive partner will help you loads. Best of luck xx
Hey, yeah I'm on the right tablets now at the right dose! Took a while but I got there. I've also got news about a new job so that's definitely lifted my spirits!! I just need to focus on changing one thing at a time (which is hard for me because I get stressed about focusing on too many things haha) thank you for your response though! Every response is a little reassurance to me!! Xx
That's fantastic news about your new job, congratulations Glad you got your drugs sorted, it's just a matter of ticking things off the list. I'm rubbish at dealing with alot of challenges all at once. Just take each day at a time.
You are certainly not alone. I too work full time and it IS difficult. The exhaustion is somethimg GPs and consultants tend to skirt round. I can recommend the NRAS helpline as they put you in touch with people experiencing similar issues, something cathartic about talking to someone who actually has the condition.
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do you have any support at home?
RA alone
Home alone!!!
Anyone on Enbrel alone as mono therapy?
I'm so glad I'm not alone!
home alone
