Feeling low

palo

I feel really **** now, just found out I have moderate to severe osteo-arthritis in my left knee, I can't believe I have in the past 17 months been diagnosed with mild to moderate arthritis in both hands, severe arthritis in right foot, moderate arthritis in left foot, and moderate to severe arthritis in left knee.

I feel really let down by my body as well as the healthcare I have received. I am now looking at 2/3 surgeries in the next year, it really sucks.. and my neuro agrees it is probably down to the steriods they gave me for MG...

BettyMac

Hi palo

I’m sorry you’re feeling so low. I wish I could offer something to help you feel better.
Just know that you’ve been heard.
Many of us have been where you are and we understand.

stickywicket

I'm so sorry this has happened. It is a fact that arthritis of any kind does tend to move into other joints. My back is in relatively good nick and so are the replaced joints apart from the ancient knee. We do learn to deal with all the new arthritis additions but it is hard and especially so for you with the added difficulties of MG.

I don't know if this will help but I'm fairly sure steroids can't cause OA. They can certainly cause osteoporosis but that's different and, indeed, some studies have shown that people with OA are actually less likely to get osteoporosis. This page, from the National Osrteoporosis Society, might help. There's a useful section near the bottom of the page about OA v osteoporosis. https://tinyurl.com/y6wcy6eg . At least it seems that nothing you did, or took, caused it.

Airwave!

Palo, feeling low is a natural part of life, just an opposite of feeling high and we can't be high all the time. With arthers help our moods often fluctuate with our illness but on a positive note the mood swings aren't permanent.

It may help you to attend a class for the chronically ill, it'll raise your expectations of life, they're usually free and are run all over the world.

dreamdaisy

I am so sorry, I've always thought that bodies are designed to fail because mine has done since the start of life. I remember my shock at being diagnosed with OA in addition to the PsA. - I was sure that one could only have one version so having both kinds of the disease supplied one of those life-plummeting moments.

I had a phase of three operations in the space of eighteen months, it wasn't easy but I got through: you will too because you are made of stern stuff. When I am feeling low with it all I turn to the wise words of Khalil Gibran for comfort:. the deeper sorrow carves into your being the more joy you can contain. Take care, we're here if needed. DD

palo

Thank you all.

This week has been rather taxing, hubby was diagnosed with melanoma stage 1 on Tuesday and we are waiting to hear from the hospital what next steps, what that means etc. It is the first news we have had since the operation to remove the lump at the beginning of June.

We have both been working on a 5 tier sponge wedding cake, with a cutting cake in this terrible heat and things have been rather tough.

I was declined by PPP to have the surgery on my right toe done privately as it is pre-exisiting, which I suspect everything for me is...and having to wait another 7 months is a daunting prospect.

But on a positive note, I have accepted that I need help moving and am looking at mobility scooters etc but quite fancy a segway or powered skateboard etc...Not sure if my back is up to it though...

stickywicket

I'm truly sorry. Sometimes things medical just seem to pile up on top of each other and this seems like one such time for you and your husband. And, of course, all is exacerbated by the heat and the stress. I hope all goes well for him.

Do some thorough online research re scooters. There are some fun-looking ones about but the mobility shops tend to stock only a few basic models. I'd advise against a segway or skateboard. They require good, strong muscle control throughout the body for balance. In my book, arthritic joints are not at all conducive to this. But, if you know someone with one, or have a centre near you where people can use them, you could have a go before buying.

Airwave!

Many of the sales literature doesn't point out that Segways, electric boards, and their like are illegal in GB, if used on a public pavement or road see Construction and Use Regulations, they do not fall into a catergory. Electric mobility scooters used at 8mph on the pavement are as well, they should be limited to 4mph, the higher speed is for use on the road.

I started out with an electric bike which did the job but I wore the battery out and cost more than the bike to replace. Having used the e bike so much I brought a lightweight bike with 21 gears and that carries me around town.

crinkly1

Hello Palo.

I'm very sorry the OA is attacking from all angles and that so much surgery is in the pipeline for you. That will be tough but, once you have struggled through it all, you will hopefully enjoy marked benefits.

Meanwhile if you are considering mobility aids and the more 'sporty' options aren't feasible don't write off electric powerchairs. For someone who (like me) also has OA in hands and wrists a chair can be a really good alternative plus it requires less space than a scooter in shops and other public places. Following a lot of research I've had a brilliant chair for a number of years and originally chose this model because it had the ability to cope with uneven terrain. That meant I could continue to enjoy country walks - dependent on width of path, lack of stiles and so on. For getting out and about it loads very easily, via ramps, into a small trailer. (We don't have a hatch-back car or it would load into that.)

There will be many individual requirements for you to consider so take your time, look at all options and you'll find the perfect mode of transport for your particular needs.

Mctricky88

Hi Palo, sorry to hear you're going through a tough time at the moment and that everything seems to hitting you and your hubby at once. Hopefully the fact that you're being specifically diagnosed means that you can get the correct meds and treatment to get you to a better place.
You did make me laugh when you mentioned getting a Sedgeway or electric skateboard because up until that point I had imagined you may well be in a wheelchair (I'm new to the forums so haven't got a mental image of any folk yet). So there you go, you're not falling to bits as much as I thought you were. Good on you though because you're thinking of solutions to your problems and I would highly recommend getting something to help you get out and about but agree with all the advice to do your research and try things out.
If you have a Shopmobility site anywhere near I'd pay them a visit as they normally have numerous different forms of transport to try out. I do agree that electric chairs are easier to get around in shops than scooters. I've never lived down, catching a rail of clothing in one shop with the scooter I was riding and before I realised I'd demolished a couple more.

Sorry to hear about the Insurance knocking you back for the private surgery, it's so frustrating having to wait. I've never had private medical insurance but I did pay to get a knee done privately in September after waiting nearly a year just for the consultants appointment then the same surgeon done my other knee in December on the NHS. Both operations great by the way and first class service for both.

Anyway, I wish you and your hubby all the very best and keep us updated with how you're getting on.

Mctricky

dreamdaisy

Think things through, Palo: both Segues and scooters require balance, strong leg muscles, good levels of co-ordination and all that adds up to high levels of concentration. Also factor in the general stupidity of the general public when they are out and about, lost in their own little words, not paying attention to where they are going or what they are doing. With scooters you will also feel every little vibration as the wheels are tiny and suspension limited at best.

I have used a rollator for years and I am sure that has helped to preserve muscle strength and some of the range of movement in my hips. I have always used a seated ones so I could sit and rest every now and again. Yes, walking hurts with ten creaky toes and OA-affected ankles and knees but so what? That is never going to change but using my muscles for perambulatin does help the joints. I have a mobility scooter but that has had only one outing, it sits in the garage, taking up useful space but at least it's there for the really tough times. Actually, by scooter is that what you mean rather than the adult version of the child's toy? I've seen a couple of adults scooting along, looking utterly ridiculous, sweaty and puffing fit to burst. A few years ago we were in Ilfracombe and saw a thirty-something male bowling along on a skateboard, scattering pedestrians as he went (no bell, just yells of warning). He went a magnificent purler over an uneven paving slab, much to the hilarity of lookers-on. He emerged unscathed and scuttled off, all his 'cool' completely evaporated! DD

stickywicket

Airwave is quite right. Don't waste your money on a segway or hoverboard as they are illegal except on private property. Frankly, I'm rather glad. I have enough bother avoiding ill-set paving stones and people on foot who are going slowly. https://tinyurl.com/yatbxh3d

Airwave's also right about mobility scooters. The smaller, pavement models must stick to 4mph and the larger 8mph models must be on the road, not the pavement and have lights, horn etc.

Crinkly, too, has some good advice re electric wheelchairs being more 'shop friendly' than scooters though you might simply want to leave the scooter outside any shops. I looked into all this before moving house. I might yet invest in one or the other but I'm currently deterred by the enormous cost of installing an electric garage door so that I could get one in.

palo

thank you all for your responses.

I feel ready now to get back to taking on the world....or my world anyway..