Got upset yesterday

ouchpotato

Hello everyone.

My undiagnosed whatever-it-is really gave me a reality check yesterday. I was out shopping with my 2 teenagers. Every time I tried to lift anything off a shelf or out of a freezer I couldn't grip it or lift it. my son had to do it all for me, while I pushed (hung on to) the trolley. Similarly when we got to the checkout the two of them had to unload it all onto the conveyor belt thingy.

It's fairly certain that I have an inflammatory arthritis - it was thought initially to be AS but now with the involvement of my fingers and toes (and affected nails) I am now thinking PsA. I am seeing a rheumatologist in July.

It really upset me. I laughed it off with the kids, but it was actually a really scary thing...I am used to my back and hips being painful, but not being able to pick things up? Even picking up a cup of tea hurts. Just sitting here now I have horrible pains in my knuckles and toes. Also, while walking today my left knee popped and jolted with every step, it made me feel sick.

Just offloading really, because I know you all understand. I just want to cry (but sleep first as I am soooo tired).

lily

Hiya

I so know how you feel, ive been of work since start of march and its only now that I can start to do things with my hands, I have to have help with everything and having to admit to yourself that you cant do everything is a bummer.

Hopefully you will finally be diagnosed and the right treatment can begin.

Take care
Lily x

maria09

Oh ouch poor you
I know exactly how you feel I too have a type of inflammatory arthritis
My shopping alone days are well and truly over
It took me a long time to accepted it but I'm getting there
Weekly shopping is done by hubby when having a good day I wander round with him and usually spend more
My daughter and son are good if we go shopping together they make sure I don't either fall over or drop things and we usually have a good laugh
It is hard to accept the things you can't do anymore and I'm still trying but getting there slowly
I try to take each day at a time good or bad really bad days I pretend I'm just having a chill out day silly I know but find it helps me
We all try different ways of coping
I hope you get your diagnosis sorted
Maria

kentishlady

Hi. Sorry to hear you are having such a rough time and hope you will get some help from your appointment. I understand exactly how you feel as I hate admitting I cannot manage to do things.

Am sure some of the others will be along to give you their support. In the meantime, am sending you some very gentle ((((()))) Beryl. x

ouchpotato

Thankyou so much for your replies, and for making me feel less alone. I am usually such an able person; I'm a single mum and am used to doing everything myself. It's a hard pill to swallow. But the kids are great and they don't let me feel sorry for myself for too long.

dibdab

Just sending some gentle hugs {{{{{{{ }}}}}}.

One of the hardest parts of inflammatory arthritis is getting to grips with the stuff we can't easily do anymore . But let me encourage you with the thought that folks are happy to help if we let them, for those who love us it makes them feel that they can at least do something to make the situation more bearable. also once you get a diagnosis and some proper treatment you may well find that you are generally more able-8 weeks into methotrexate I have less pain and stiffness, hands aren't swollen and my grip is better- though of course there are still aches and pains (I have RA) life just feels better.

It takes a while to find the right combination of drugs, but for most of us there is a least a glimmer of light at the end of the tunnel.

Take care and be gentle with yourself.

Deb xx

villier

Sending you some ((((())))) ouchpotato hope you are feeling a bit better soon..................tc....................Marie xx

DebbieT

Bless ya, This was me a couple of years ago. I kicked & screamed against it but that made me hurt more

I have a large Asda close by so can use their mobility scooters but if hubby & I are both too ill then we shop online & have it delivered, it's getting easier each time we do it

My kids are great, thankfully. Having 2 disabled parents must be such a nightmare for them & I know it causes masses of guilt for us. They do like to help where they can tho as they can see the struggles we have daily.

I have PsA & I've had it quite well controlled with methotrexate but unfortunately I may now have to stop it as I'm getting a lot of chest infections!! This doesn't happen to everyone tho It'll be a relief for you just knowing!!

Ure feet & hands are like mine ... The last to join the party wen they're often the 1st!! Keep posting huni it really helps. Hugs.x

barbara12

I am so sorry you are having a rough time...it is hard to come to terms with..you think you have then something else comes along....and don't apologise for unburdening yourself it will do you good...(((()))xx

ouchpotato

Thanks for all your replies, you really are a lovely bunch

I'm still struggling to deal with this (whatever this is). It's getting worse at an alarming rate. Yesterday I had to use my stick everywhere in the house, just going from room to room. My ankle and knee were horrendous. I think I can rule out RA, as most of my pain is on my right side. Toes, Ankle, Knee, Hip, SI joint, Elbow and Shoulder. Left side it's only one toe, occasionally ankle, sometimes knee, however my left SI joint and hip are hurting more frequently now. I also have horrendous neuropathic pain in my thigh. Add to that the length of my spine and my neck (sometimes it feels such an effort to keep my head up).

It really sucks!

I hoovered yesterday and ended up sitting on the floor crying in frustration. I'm really not dealing with this very well. How do you come to terms with it? I know the first step will be getting a definite diagnosis which will start when I see the rheumy on 19th July; at least then I will know what I am dealing with. But the loss is heartbreaking. I know I will get through it, and take it on the chin...I've been through so much in my life and nothing has put me on my back so far (domestic violence, divorce, homelessness due to another bad relationship) but this is something which so far is out of my control.

My partner and I are going to blackpool on Friday with my 2 younger children. I'm really looking forward to it, but am also dreading it - a 5 hour drive, the walking around, the standing around. I can't go on the big coasters that I used to love as I know that would crucify me, and while I am happy to wait while the others go on them (and I can go on the less 'violent' rides with my daughter) I don't want them to feel like they can't do things as it's not fair on me, if that makes sense?

I'm rambling now, sorry. But my partner doesn't understand, and I can't keep burdening the kids with my worries and thoughts.

Take care

x

stickywicket

I wish I could do a snap diagnosis for you, ouchpotato, but I’ll leave that to your rheumatologist and hope that you can soon get started on some meds that will really help.

How do you come to terms with it? Slowly, over many years. It sounds as if you’ve already come through quite a lot in life so I’m sure you’ll deal with this too. I agree that the lack of control is scary but, hopefully, you’ll get more control once established on proper meds. You still won’t be quite the same as before but what lies ahead can still be very good indeed.

Now then, Blackpool. I strongly urge you to borrow a wheelchair from the Red Cross if you don’t have one of your own. Blackpool is flat and very wheelchair friendly and you’ll be in far less danger of being a drag on the others’ holiday if you’re in less pain and able to go wherever they do. I went to Disneyland a couple of years back and, far from being a drag, I got my family in the priority queue for everything Of course you don’t want them to miss out because of your situation but, if you have a wheelchair, there’s no reason why that should happen. Any time you can’t join in, just ask to be left somewhere where you have an interesting view.

And remember, being pushed by a superbly confidant 6 yr old who can’t see over your shoulder to determine where he’s going is every bit as scary as any of the white knuckle rides And free.

ouchpotato

Stickywicket, thankyou that made me laugh out loud. My daughter would love to be pushing me around in a wheelchair; it would be a great substitute for the pram of the baby brother or sister I am cruelly denying her

I think my problem is that I am fighting against it. I keep thinking I am not bad enough to need one, or that I'll feel/look a fraud. But then when I think that I cannot walk around the house without a stick I think who am I kidding? And also pride...I still haven't used my stick in front of my partner (we don't live together). Isn't it silly?

I can only hope my sense of humour doesn't desert me; it's gotten me through some very dark times and I'm sure it will be my saving grace with this too.

x

stickywicket

I think most people, when they first use a wheelchair, think they’re a bit of a fraud. I know I did. My first ever wheelchair trip was by means of a Red Cross one borrowed for a Blackpool holiday. My younger lad was about 4-5 at the time. He rode on my knee and, whereas I was trying hard to melt into the background, he insisted on talking to all-comers. (“Is it your first time in a wheelchair too?” :roll: )

Pride can be both a help and a hindrance. Trust me, I know :oops: You have to work out what’s best for you. There’s no one-size-fits-all solution. I hope you have a very good holiday whatever you decide.

maria09

I think we are all the same to admit our difficulties is admitting defeat
When really we need to accept we can't do certain things we used to do no fault of our own but the b****y condition we can't help or control
I'm lucky at the min I'm not needing a wheelchair but know it might come at sometime
I struggled long enough to admit it had beaten me and work was not an option any more but realised enough was enough so after 30yrs of nursing I retired at age of 49
Best thing I did as I'm struggling with housework which I do at my own pace never mind rushing around 8hours a day on a busy ward
My point I think is we need to remember its not our fault it's nothing we have done wrong but something we have to live with and try make the best of it
Try have a good time in Blackpool enjoy been pushed around in your wheelchair get some Bodecia wheels with knives on and no one will get in your way
Maria

dreamdaisy

it's not easy realising that your life is being eroded little by little in terms of what you can do but, over time, you will learn how to pace yourself better. I stop when I feel I can do more and take frequent rest breaks. I have also altered the way I do many things. A little housework is undertaken every day and, whenever possible, vacuum sitting down (I have a cylinder cleaner which is easier on my hands and arms). Some jobs might take all day but, eventually, they get done. I recently posted about getting shot of our duvet and returning to sheets and blankets because I can no longer cope so well with shaking it out. I'm not going to bother about tucking things in but I hope it will be easier to manage.

Arthritis of any sort involves compromise - and losing one's pride is a bonus. If you start looking around you will see many people using walking aids and mobility scooters, and I bet you don't stop and stare at them, do you? I was really pleased when I bought my rollator because, suddenly, I could go out and do more, including queueing! Nobody takes a blind bit of notice because they are utterly absorbed in their own lives. Holidays now involve my husband going off for walks and I go off and do summat else. He misses me more than I miss him.

It's not easy but, whenever possible, try to focus on the things you can do and make the most of them. Family won't necessarily understand what you are facing and dealing with but The Spoon Theory and There's a Gorilla in my House are two helpful pieces for them to read (they're on the net). You'll get there, it just takes time is all. DD

woodbon

Hi,
It is hard when things that you used to do without thinking become difficult if not impossible. I think its one of the hardest things I've had to learn and I still overdo things and suffer afterwards, I can't help it.

I hope you find some relief in the answers the rheummy can offer you, but it can take a while for them to do tests and rule out all the different types of arthritis until they find the correct diagnosis.

Try and take things as easy as you can, 'pace yourself' is what I get told and it's good advice if you can manage it - I confess I often do too much on a good day and suffer the next day, but it is good advice!!!
Good luck, love Sue