New to the group.

Mumof2

Hello everyone,

I’m not really sure what I want to say. It’s been tough since January, I’m off work and swapping medication but still waiting for the relief it will bring. I guess I’m getting lonely, I don’t really leave the house at the moment, I’m trying to keep my mind busy but I’m struggling. I have a wonderful family who have been a fantastic support, they take turns to take the kids to school and pick them up. My husband is being great too. I think it’s just hard for me because none of them really understand what it’s like and I don’t want them to get fed up of me. I’m finding it hard to have to pace myself, if I move around in the morning then I can’t in the afternoon so I have to choose which movements matter the most. I miss the routine of normal life and I want things to be ‘normal’ again. I know I’m lucky to have the family and love that I do, I just thought that it would be getting easier already by now.
Anyway, is anyone else off work and finding things different right now? What are you doing to keep yourself feeling happy and hoped?

ghostbuster

Hi, you’re experiencing valid and familiar emotions as while you are suffering and your specialist is working out what medication will better control your symptoms your world gets smaller, that’s difficult to accept. I’m new to the forum but have had to endure the long wait for a medication that will ease the symptoms. Staying positive isn’t easy but you have a support network who seem to be keeping the day to day things you can’t manage under control. If you feel those around you don’t understand ask your Specialist or nurse to explain your condition and the symptoms you are experiencing. (My Specialist nurse was amazing with my family and was happy to answer questions or concerns) There are ways of engaging with the outside world in the meantime (this is one) I arranged regular video calls with friends and family to stay in the loop as I didn’t want to withdraw. I also found Better Help counselling useful (there are others and you can have one to one video and phone appointments as well as group sessions) and I was constantly researching alternative therapy options and tried acupuncture, physio and hypnosis to seek relief. At least while you are researching your mind is occupied and looking towards positive options. It has been a along road for me to finally find a RA medication that works and I’ve been told that I now need both hips and a knee replacement so I’m straight back on the long road again. Hopefully your medication will give you long term relief and you can get back to managing and enjoying your family and get back to work. All the best. 🙂

noddingtonpete

Hello @Mumof2 and @ghostbuster you are both very welcome to your new friends on the Online Community. We are here 24/7 and yes there is usually some one on at all hours. I always say you are now among new friends you just haven't connected to them yet. This is a safe place for you to ask questions, chat or even rant if needs be.

If you do have any specific questions just ask. Here at Versus Arthritis apart form peer support and experience we also have a wealth of information on arthritis, treatments and hints and tips, just head over to our website and use the search.

Once again welcome both and look forward to chatting with you.

Best wishes

Peter

Lizebeth

Hi Mumof2,

I'm new to the forum as well, I joined because I've been finding it all so difficult recently and for me I deeply resent the loss of individual choice I had as I now have pain dictating everything.

I get frustrated even though I know its all part and parcel of chronic illness, its not at all easy to cope with though is it, and it can be isolating even with your family around you.

Recently I've rejoined my local library and am exploring the digital side of it with a passion, once you've joined you can download Ebooks for free and Magazines I don't have any use for audio books my self, but there are loads available.again all available free.

I'm waiting for a GP appointment in April to try and start sorting out my symptoms ( I had a diagnosis of Rheumatoid A a few yrs ago but opted out of treatment- guess who's suffering for that bright idea now lol)

So anytime you want to vent/rant/or plot the downfall of civilisation then count me in for a reply.

Be kind to yourself and hold on to the certain fact that this phase of it all will not last forever and you will get there again, maybe not in the way you thought it would be, but you are still making progress even when it feels as if you're not and you are so much much more than just a chronic illness.

bentleybiscuit

Hi @Mumof2,

I can totally relate to what you are feeling - thank you for sharing - and to what @Lizebeth and @ghostbuster have said, such good advice - be kind to yourself and do as many things as you can to feel good about yourself. The bad phases of RA feel so permanent, but there's always change around the corner, even though that's hard to believe. In the meantime, finding activities that you can manage and getting support from others is such a good distraction. I try and tell myself it's okay to just be. Like a cat or a guinea pig, just existing and finding the joy in the little things. Over the past 15 years I've relied a lot on medicines but with hindsight I wish I had delegated a lot of the chores and focused more on my well being and relaxation. Hydrotherapy can be really good for a feeling of having done something in the week, having gentle interactions with others whose bodies are misbehaving too, and letting go from the pain in the warm water. I find acupuncture helps me a lot as it's therapeutic chat and nerve stimulation in the same hour. Recently I accessed psychological help to reframe my interpretation of my illness in a more self-compassionate way. With all these things, it's about finding the right people but I'm sure you will.

Mumof2

Thank you all for accepting me into the group and being so understanding and compassionate. I didn’t think the mention in my first post but I should have said I have juvenile idiopathic arthritis (JIA), I don’t think it makes a difference really but I would hate to be fraudulent.

You’re all right, the world does get smaller when it’s bad, @ghostbuster I haven’t arranged any video calls because I’m embarrassed/ashamed of being like this. It’s such a good idea though and so simple but I hadn’t considered it because I don’t want people to see me like this. I know people are nice and kind, it’s really not them. It’s me that has the issue with it I think. I don’t like the look of pitty in people’s eyes, since being a kid whernever anyone found out about it they’d tell me I was too young for arthritis and it must be in my head/was something else. I was discharged when I was 16 and told I’d grow out of it. From then it was a constant battle with GP’s and myself because they wouldn’t listen and I knew it hadn’t gone. I was 32 when I was finally seen again by a rheumatologist and it was confirmed that it is my JIA with disease activity in adulthood. She told me the thinking and understanding of JIA and arthritis on the whole has changed and grown through research which is fantastic, and so I was treated for it. That was six years ago.

@Lizebeth I feel resentful too. For the lack of choice and for the removal of my independence. It is part of it but it’s the worst part and it sucks! I’m trying to accept it but I’ve being tying for years and I’m not there yet. I am absolutely in for plotting the downfall of civilisation! That made me smile 😀

My family are amazing and they do their best to understand, but I don’t think they ever fully will because they’ve never felt it. I don’t want them to feel it, not ever and I’d choose if a thousand times over if it meant they never have to know, but it is hard. Especially when my kids want me to play and I can’t. They do their best to adapt their games/ideas for me but I can see it on their faces that it’s not what they want. They are still young, 6 and 8 so it’s hard for them. Maybe a rant is what I needed, to let it all out. I have got my name on a waiting list for counselling through work, there’s a few weeks wait.

@bentleybiscuit thank you for the different therapy suggestions. I’m going to have a look into hydrotherapy, I’ve had it before and it was really helpful. Thank you for pointing it out, I haven’t considered much outside support. I think I need to stop feeling sorry for myself. I just thought that I’d be ok again faster. I don’t know why, I know the drill.

Thank you all for being so kind. It means a lot.

Lizebeth

Hi @Mumof2

Just reading your reply and its given me some thoughts especially the line where you write that "I think I need to stop feeling sorry for myself"

I don't think you are at all feeling sorry for yourself, I think you are experiencing the very natural pathway of grief

that comes from the burden of coping with a chronic and painful condition in a society and culture that screams at us all constantly to be perfect and the best of the best and to only aspire to be better no matter what the situation.

Its impossible…all of it, chronic illness or not its a constantly shifting goal post with lots of finger pointing and moralising about anyone who turns up late or looks a bit tired.

Human beings are not perfect, but if you'd ever been a witness to one of my work related performance reviews then its clearly a message thats never reached the human resources departments across the land.

Living with a chronic illness is some of the hardest work anyone will ever do.

I'd say Its harder living with chronic illness than- working on an Oil rig in the North sea because a person can always resign from that job, its harder than being a professional soldier going through battle zones because they don't send soildiers to war with out training and weapons but with chronic illness it just arrives one day unannounced and you have to get to grips with it with absolutely nothing more than your own unprepared mind and a shift manager who can't even fathom that buses don't always run on time let alone get their heads round biology.

The medical profession have a back history of denial, if they can't immediately fix it then they insist it doesn't exist, thats the entire medical history of medicine in a nut shell.

Occasionally you get an eccentric who smuggles their way in to the medical profession and then stands up and says I think cholera really exists and its not just lazy orphans refusing to give up their free handouts of gruel in the work house, I think its the water pump holding cholera bacteria and poisoning everyone, and of course they get told to shut up, so they go off in a huff and prove Cholera is in the water pump by drinking from the water pump which is a ridiculous thing to do but the only way the medical profession has progressed (and is still progressing)

In the mean time people are just left to suffer and told- its all in yer head, till some mad medic goes off and eats a cream cake they have pre loaded with bacteria just to prove stomach ulcers don't come from stress then all the other medical proffs applaud them whilst saying "Who knew that eh" and all the former patients whisper- But we said that it wasn't stress didn't we???

its the cycle of medical denial and Nobel Prizes for medical advancement sadly we don't as patients get medals for putting up with this nonsense but I guess that’s why they call us patients because we have to have loads of patience to put up with them.

Anyway look how I ramble on !!!

to conclude this long post-

I don't think you're feeling sorry for yourself, but you know what, if you are then…there is nothing wrong with that, if anything why wouldn't you feel a bit sorry for yourself? it is a difficult, painful exhausting experience, if that doesn't entitle a person to the occasional bout of feeling sorry for themselves then I don't know about you but I'm in a lot of trouble as now and again I do feel sorry for myself.

I take full advantage of the -Its Okay to not be Okay meme thats doing the rounds of the internet and I highly recommend it as part of the many ways of coping in all of this.

Baloo

@Mumof2 I hope you have a bit of time to read and connect.

To be transparent I'm 71 and my condition eased on 1 July 2024 that's when I stopped taking painkillers.

Be yourself. Its not meant to be free advice either when I say that. You have a condition to manage and it's essential you can do it 'your way'. Your system knows what it needs and for others not to see your struggles is a real noble idea.

I have to admit though, I tell people straight I have arthritis and what I'm doing to handle it. So if making it look easy is your thing then say it. We have some real boasting rights about our triumphs over adversity.

Mumof2

@Lizebeth and @Baloo, your both right.

It is hard and it sucks and it’s ok to feel sad about it and the things it takes away, even the temporary things that have been lost. I just don’t know how to accept it for what it is. @Baloo I admire that you’re upfront in telling people. I have to admit I read your replies a couple of days ago but needed a little time to process them. I find talking about my condition confronting at times. I have however decided to try and follow your lead and tell people what’s wrong when they ask. It’s fairly obvious at the moment because I’m not walking normally so people have asked if I’m limping or if I’ve fallen/had an accident so I’ve told them honestly that I have JIA and I’m swapping medication. So far people haven’t asked much more so maybe that’s the way forward. Own it better and allow myself to be weak in sight. @Lizebeth I like that meme too and I’ve sent it to friends who have been struggling with something.

None of it is easy at the moment.

Baloo

@Mumof2 good going.