How do I

jenzie06

come to terms with my continual decline?

When I am at home and pottering about I can just about cope. Anything extra and I struggle.
If I want to go shopping I discovered I was picking the top two things to do as anything else and I'm too pooped or in too much pain.
If we go out as a family its a massive event which requires plannng.
I'm considering buying a mobility scooter as I can't wheel myself in my wheelchair but then I would have to get a car that it would fit in and a hoist to get it in and out. Then there wouldn't be enough room for the pushchair.

I'm struggling to get my head round if I'm finding life hard now, what am I going to be like in 5 or 10 years?

It's all wrapped up with the recent loss of my mum too.

Anyone got any suggestions on coping?

LignumVitae

Hi Jen

It sounds like you are going through a rough time. I'm sorry, I can't remember which flavour of arthritis you have. I think we all struggle to deal with the future - I know when I first started I entered a bit of a black hole on that and I've been lucky in that things weren't as bad as they could have been and as I imagined. Sometimes the only thing you can do is not look forward and predict those changes. I now always try hard to work on the basis that maybe the disease will slow, maybe the meds will get better and maybe things will be a bit brighter. Maybe that's a shallow way to deal with it but it works for me and stops me thinking of how terrible things can be. I think you have already very wisely identified that you are struggling with two lots of grief, I'm so sorry about your Mum, that must be such a hard thing to cope with and to go through. The arthritis 'grief' for me varies - I read a brilliant thing this week where somebody described their grief for arthritis as fluctuating - sometimes you can accept it and sometimes you can't accept arthritis. I think on some level that is the case for all of us. You have to ride the wave of acceptance or grief as best you can. I don't think I am helping you much here but your post was unanswered and I didn't want you feeling alone - I just wanted to let you know that we are here and understand how hard dealing with arthritis and it's changes can be, let alone when you then add grief for your Mum into that too (((((()))))) Give yourself a chance to mourn both but try not to look forward to a future of continual decline, concentrate on what you can do and not what you can't - I'll never be running around after my girls as much as I would like but I am Queen of the story telling and everybody else is snubbed in favour of me - that keeps me from focusing on the can'ts too much! LV

stickywicket

I'm not sure any of us can advise, jenzie, but we can understand. When my two were little, before I'd had any joints replaced, was the hardest time. It did get better. They are not always so dependent.

Shopping? I'd do everything, or almost everything, online. Yes, it means missing out on some local bargains but, as we keep saying, disability is expensive.

Some disability scooters are lightweight (though I don't know how lightweight) but they do look a bit dodgy on stability. If you needed a hoist to get one into the car I would imagine you'd need a car big enough to also take a pushchair. (Can you get the pushchair in unaided?)

As LV says, we can look too far ahead. There were times when I thought I'd never get mine to adulthood. But we did it between us and they're rather nice, caring adults. Like her, I tried to concentrate on what I could do rather than what I couldn't. I became an expert, and valued, scorer and ref when their friends were round for table tennis or miniature snooker ( And it gave me a rest )

How is your younger one? Is he making progress? And how are you getting on with the tendon problem in your finger?

jenzie06

Thanks for the replies.

I'm hoping that it is just a blip and once I come to terms more with mum then it will help me with the other stuff.

I'm also hoping that as the boys get older it will become easier, the first couple of years are the hardest physically.

LV - I have RA

Sticky - thanks for remembering. My littlest one turned 6 months last Sunday. He's finally mastered neck control and is coming on well. He's definitely a bit behind physically being prem but the docs have reassured us that he will get there eventually. He's definitely on the relaxed end of 'normal' and has no idea that he could weight bear on his feet (we've bought a door bouncer to help although he gets 'bounced' by his older brother rather than bouncing himself currently!). He is extremely smiley and giggly which helps when I'm feeling low. The reflux has improved finally as we have introduced solids but he still can't cope with a bigger teat and is stuck on the newborn ones, we don't know why. We're back to peads with him in December. My tendon is still overstretched. The surgeon still wants to wait to fix it until the boys are more independent. Good news is that it hasn't dropped off! I'm having to have my splint repaired regularly as it is not designed to last this long and my knuckle bruises regularly in impressing shades of purple. My OT despairs!!

Hope you both had a good day.

stickywicket

That's definite progress for the little fellow. (Is it Dylan?) Slowly but surely is as good a way as any. And, if he's a happy little soul that counts for a lot too. You must be doing something very right I hope December's news is good.

Sorry the tendon's still not good. I guess you must be coping well with it though.

jenzie06

Yup it's Dillon (french spelling rather than welsh).
He's loving the food especially fruit (was wolfing down papaya this afternoon and cried when he'd cleared the bowl!). The food is making a massive difference and he is now hardly sick at all, usually just a bit straight after his food rather than lots all the way between feeds. He's even attempting to sit on his own!
All my boys have colds currently, I'm fighting it off too but someone has to keep going!

One thing I have noticed is that my hands have become incredibly weak all of a sudden. If Dill grabs the spoon I struggle to get it back usually resulting in orange goo being flicked up the carpet. Thank goodness for baby wipes!
No idea why this sudden weakness has occurred. Any suggestions?

hileena111

Hi Jen
I'm sorry about your mum. There will be grief for her but also grief {which is the same as bereavement} for the thing you have lost because of the arthritis.....so even if we haven't lost a loved one the grief is there at the beginning and we have to come to terms with things we have lost.
On a more practical level.....I understand about the mobility scooter. I have one. {Fold up} but if I go out without my husband it wouldn't fit in my car and they are very heavy to take apart and put together again {for us....with arthritis} If I think I need it when we ar out together ...no problem it goes in my husbands car.
I'm not sure if you have the one car.......???? Would a scooter not fit in that for family events.?
Its mine which is a little Nissan that wont take it
The other thing is if we go out together and I need it.......most places hire one.......google......imagine you are going on a family outing.....then look that place up.....anywhere close by that would hire one.
I go to a large shopping mall in my car which means no scooter
I hire one from there.....but must towns somewhere there is a shopmobility. Worth a look on line
It must be so difficult for you with the children so little. I've got to admit mine were well past that stage when my arthritis hit.
Don't forget....plan small treats for yourself. Its the best thing you can do...Look forward to something no matter how small
Love
Hileena

barbara12

Hello Jen
So sorry you are struggling,like Hileena my family were grown up and left home when I started with arthritis..I remember you having your first little boy.. you have gone through so much with your family and your mum, so try and be kind to yourself..do you have anyone that can help with the boys and give you some time on your own..but saying that those little one are giving you a lift.. I do wish you well ..and we are always here if you want a chat...xx

theresak

Hi Jen,

You have a lot on your plate, and I`m so sorry on the loss of your mum - that will leave a big hole.

By the time I was diagnosed my sons were grown-up and had left the nest, so I never had to cope with toddlers and RA at the same time.

Shopping can be a pain, literally, but online shopping seems to work well. At Christmas I try to get what I can from A**z**, to save all the leg-work, and miss the crowds, which I hate. We bought a folding mobility scooter on the advice of my rheumy, but it`s still unwieldy to get in/out of the car - my hubby has to do it as I couldn`t manage it on my own. Hileena`s suggestion of hiring one might be a better bet, or some mobility places let you try before you buy.

I hope you can soon start to feel better. My own lovely mother`s advice was always to take no more than one day at a time - but although it`s good advice, I never quite mastered it. Make sure you try and squeeze some "me-time" into your busy life.

Tezz x

stickywicket

I always assumed it was just that the babies were getting stronger and I was getting weaker :roll: I never really asked wh,y just assumed that was arthritis. I found the hardest bit was when these strong little people were running round and I couldn't run after them

Starburst

Hi Jen,

You've had so much to deal with over this last year; acceptance of a change in circumstances is a difficult thing to deal with and you've got a double whammy. I had some counselling to come to terms with my 'new' body and life and I have to say, I found it really beneficial. It offers some time and space to explore who you are and you're going to be. Deep down, we are still the same people, just with different abilities. I think that's why many people chose the term "differently abled". I can still go shopping but I need to use different methods of obtaining food and clothes. The acceptance of this, though, is always harder than finding new methods.

I found the model of grief and loss very useful when exploring my feelings after a sudden and tragic bereavement. We tend to move through the stages at different rates and sometimes revisit them but it helped me put some feelings into perspective. Maybe it will help you?
http://psychcentral.com/lib/the-5-stages-of-loss-and-grief/000617

Take gentle care of yourself and your sweet babies. x

LignumVitae

Hi Jen

I've been meaning to post to you - reflux babies - I know reflux babies. Mine were both vomit comets (as named by Sticky and it stuck and cheered me up when covered in the stuff). Both significantly improved with food too. Summer was a silent refluxer leading to a period where she pretty much refused formula at three months. In desperation I started early weaning (feeling like a parental rebel) and hey presto she started to consume and consume. They both now eat absolutely anything, beetroot was yesterday's surprise, and have a strong commitment (addiction?) to olives. Tegen was more like Dillon with her reflux and just took to generally chucking up a little here and there - she had those bibs that look like bandanas pretty much permenantly on her (except in the bath) and could go through untold numbers of them in a day. She was also a keen drooler when it came to teething so be warned, I think there was a link.

If I'd had boys then one would have had Dillon as a middle name - it's quite an unusual spelling so it was nice to see you had it too!

I'm not sure it helps with your hands but I assume you are using baby spoons - those plastic ones - I also assume you are spooning food into his mouth. That being the case, my hands would, half way down a pot of yoghurt, inexplicably fail me and I'd have to manipulate one hand with the other to make it grip the spoon. I never understood why but guessed it was something to do with the shape of the handle being aimed at babies being able to grip them and not arthritic mothers. I now use teaspoons when it comes to spooning anything - increasingly they do it themselves - and never ever have the grip problem.

jenzie06

LV- we get through countless bibs during the day plus muslin cloths! He is mega dribbly but then Harry was from 4months til his teeth appeared at a week before his first birthday, I hope Dillon doesn't hang onto them as long as that.
Dillon really can't cope with fluids. Any formula tends to bounce but food doesn't. Anything larger than a newborn teat and he dribbles and chokes. No idea why, perhaps a small windpipe? Really wish I could just bin the formula and move him onto steak sandwiches.
He has had his first cold this last weekend with a cracking temperature. He's also taken to waking at least twice a night. Last night I was up 8 times in total, at least I didn't have the opportunity to seize up!

LignumVitae

I ended up with bales of muslins - I still use them now to mop up mucky hands and faces but I have so many I have started to find creative uses for them like using them to clean the house with. Summer was refluxy until I stopped formula and started just using cows milk - she'd be fine for weeks and then do a massive projectile vomit, the only good thing being when she hit her dad with it - sweet revenge after he missed those months of vomit cometing.

I have pulped oranges mixed with honey and frozen into fish shaped ice cube trays ready to go in the freezer for the next high temperature poorliness. I hope he feels better and you get some sleep because that makes arthritis so hard to deal with - joints know how to complain. I always stick them next to me with just their nappies on and lie them on a wet muslin to help cool them on those nights. My brother likes to tell me the official advice is not to do this but generations have done and it does seem to work - plus a paediatric nurse endorsed it for me when we were last in hospital with a fevered poorly Summer.