Hoping to find ways of improving dealing with everyday struggles

Brian_K

Hi and Thanks for welcoming me.This might be a bit long winded sorry.

I have started treatment for Arthritis and now have been diagnosed with 2 types of it. I am in my early forties and suffered for years but being a silly stubborn man just put up with it.A fall last year left me needing a rod installed in my upper leg and this started the ball rolling for finally getting help.

I have it in multiple places and over the last couple of years I have made excuses out of embankment and fear not to go to the likes of my 2 brothers weddings and various other outings leading me to drift away from lifelong friends and recently I became a first time uncle and I can't even hold my niece.

I usually try to laugh things to others but it's secretly leaving me feeling isolated and depressed.

Any little tips would be very appreciated

Apologize again for the long post

Nfk_gal0617

Hi Brian, Just read your post before turning in.

Do not apologize, we all get low with not being able to do what we would like. We adapt, but its all very wearing.

Maybe post with the type of arthritis you have and maybe somebody with the same will get back with some tips.

Anyway, hello and welcome, take care, Nfk gal

Trish9556

hi @Brian_K

I think anyone with any form of arthritis has a stubborn streak, we need it!

There are ways and means around most things, mist if which come from trial and error until we find something that works for us. I have an excellent wired tens machine fro the shop that isn't a shoe and is my go to device, especially in the middle if the night. My husband wanted to treat me to a Bluetooth version but not sure how efficient they are and this one works. I use a small bag across my body to carry it around in when in use as the belt clips are useless.

With your niece, you don't say how old she is but there is always a way of cuddling them. My late mum became a great grandmother shortly before she died from Alzheimer's and we used lots of pillows to support her holding him and the look on her face was worth it. Do, have a chat with her mum and see how you can cuddle her.

I would also suggest you reach out to your friends and family. They will understand if you explain to them what's happened and reach out to help you. If they don't they're not worth it but please don't isolate yourself, you need that support, if not now then in the future.

Love n hugs

Trish

stickywicket

It's not a bit longwinded, Brian. No apology needed. 

You say you have two types of arthritis so I'm guessing an inflammatory kind such as RA or PsA plus OA. There are quite a few of us who have done this unwelcome double. But it's not all doom and gloom by any means. However, all laughing it off and no telling the facts is likely to leave you and your arthritis very isolated together and that's not at all good. We can be factual about how things are without ever being a damp squib all the time. So many difficult things can be got round.

Firstly, importantly, holding your niece. Of course you can. You mst just be more careful than others. By the time I had my first son I'd had RA for about ten years (It started in my hands) and almost certainly had OA too though I didn't know it at the time. Picking him up etc was painful and difficult at times but where there's a will..... Of course, with someone else's baby, we have to be more careful! With his son, born 13 years ago now, I just let someone else place him in my arms while I sat in an armchair. Just don't wait until she's 6 months, heavier, unable to support herself but like a wriggly worm! That's the short but difficult period.

As for other things just tell us what's stopping you - transport problems, seating roblems, loo problems, cutlery problems, eating and drinking problems? Believe me, I've dealt with the lot and most things are achieveable with forward planning. If the main problem is not wanting to share your problems with others because you don't want to inflict hurt on them, well, i think those who care about us are more hurt if we don't and they eventually find out (as they must) that we've cut ourselves off from them.

Here, to be going on with, are two good articles on explaining our problems without dwelling on them.

http://asone.nass.co.uk/the-gorilla-in-your-house/

https://creakyjoints.org.au/living-with-arthritis/how-the-spoon-theory-helps-me-explain-the-fatigue-of-chronic-illness/

Have a read, see what you think and come back to us and ask any questions you might have. We all have arthritis. We know it's a pain - many pains - but we can face it together ☺️

Brian_K

Hi and many thanks for the replies.

I will answer a couple of questions as best I can

Firstly Psoriatic Arthritis was the first 1 and second one I only got a call about this week and can't remember the scientific name but it evolves hips and spine bones fusing together is the gist of it apologies for not knowing the proper name and don't want to guess and mislead.

Daily issues include sitting on standard high chairs/ toilets using certain stairs strength of hands lack of movement in neck shoulders elbows. I am sure you all know the little things.

Finally my little niece is 6 months and quiet the character I am afraid to pick her up in case anything happens .

I will read the articles above and answer more questions but Thanks Again for the replies really means alot

Brian

Kerenza68

Hi Brian,

I'm new here too and there are people with way more knowledge than me. I just wanted to say that I had a taller toilet fitted because getting up was sheer agony on my knees and thay often gave way. This toilet is only a few inches higher but it is a complete game changer. I'm not sure if it would be useful to you but wanted to tell you my experience of it just in case. Take care

Karen

Brian_K

https://community.versusarthritis.org/discussion/comment/706144#Comment_706144

Hi and Thanks for your reply

Ref Higher Toilet

Great to hear you have found a solution Luckily at home we have one my issue is when going into town and having to try and plan and guess where is close or visiting peoples houses can be a problem often leading to just turning down invites

Kerenza68

I hear you on that, I went to a friends wedding last year. I went to the church but couldn't face the reception for that exact reason. I felt like I was being a terrible friend but my fear about toilets and access to the venue etc just wouldn't let me risk it 😔

stickywicket

Oh dear! I rather shot myself in the foot re 6 month olds, didn't I? However, at that age they are strong but can sometimes lunge out. Sit still and concentrate hard. With luck, you'll both be fine.

Loos . Get a RADAR key for the use of their disability toilets. You can also find out where the nearest one is to any venue. https://news.motability.co.uk/everyday-tips/radar-keys-explained-what-are-they-where-can-i-use-them-and-how-do-i-get-one/.

Also, I'vr rung hotels etc to find out how accessivle theirs were for, say, awedding. They're usually very helpful but do know what your requirements are because other people's ideas about 'disabled access' vary a lot. But do ask. People are mostly very anxious to help.

stickywicket

P.S. If, like me, you struggle with locks......

I usually stand my husband outsidè with instructions to repel all boarders. If it's a long line of Ladies Loos, rather than a singlè 'anyone's' I head for the furthest from the entrance on thè grounds that most people won't. But I have been known to approach a total, kind-looking, unhurried-looking stranger, explain my predicament and àsk if they'd be kind enough to stand guard for a couple of minutes. I've never been refused and have met some lovely people that way.

Brian_K

Some top tips Thanks very much

With Locks I do struggle I sometimes just chance leaving them undone especially in quiet places (which I try to go over busy places ).