Just about had enough

heyjude

Hi,

This is my first post on the forum; I looked for someone to talk to because I feel at an all time low with my arthritis and fibromyalgia. This has come to a head because i went out with my son's fiancee's family yesterday and I felt so "not a participating member of the group". The men decided to go off for a drink but nobody told me until I found myself being pushed by my future daughter in law's mother; we went to browse rund the clothes shops. My future daughter in law and her mother are so kind and used to pushing a wheelchair but it was the little things -- like my future daughter in law was walking with her mother who was pushing me and they would stop to look at a dress for example and would leave me facing forward so I couldn't see what they were looking at behind me and I cannot twist my head; they chatted away with each other which is natural but because I wasn't facing them I couldn't join in; they said to let them know if I wanted to look at something but apart from that my opinion wasn't sought -- all little things like that. When we rejoined the menfolk and my husband pushed me again everyone else dropped back and although I tried to converse with them they couldn't hear me and I got so fed up I just stopped trying to engage anyone at all. My husband was thrilled that I had been taken off with "the girls" and I feel I can't tell him how I feel because it would sound ungrateful and make him feel guilty for leaving me with them. I keep telling myself I'm being paranoid, that I was included but I am experiencing very strong feelings this morning of just how "different" I am to the "norm" because it isn't just the arthritis that holds me back its being in the wheelchair which islolates me. I also feel I must be very boring to be with because I cannot drive any longer and therefore find it difficult to get out and about so i feel I don't have anything much to converse about because i have nothing to tell anyone. I am afraid these feelings will make me want to stay home alone more and more instead of trying to go out because at home I don't get these negative feelings and am therefore happier within myself.
Our son is marrying his fiancee on a cruise next Christmas and her parents and us are going too; I am now becoming very worried that i will experience these feelings during the holiday because obviously our future daughter in law will relate to her mother very strongly and I'm afraid of the feeling of being differnet and left out will overtake me and become so unbearable that I will end up making some sort of scene which will spoil it for everyone and spoil any chances of having any more family times together. In short I know now I am different and will always be so. How do I stop feeling like this?

stickywicket

Hello heyjude and a warm welcome to the forum.

The thing that struck me most about your post is that, if you’ve got as far as being in a wheelchair and only recently started to feel ‘different’ and ‘left out’ then you’re doing amazingly well at coping with all that arthritis brings. Many people feel as you do despite not being in a wheelchair.

I use a wheelchair and my neck hardly turns and I can promise you that you are not alone in finding that you are looking in the wrong direction to see what others are looking at and you are also too far forwards. This, to me, is normal :roll: . If I’m particularly interested in something – or think I might be – I ask to be pulled back or turned round. And this is usually with my husband who has been pushing me, on and off, for years. Very few people indeed instinctively know how to deal with a wheelchair. They have to have it explained to them and they probably won’t remember. I’ve developed a habit of looking at what I can see not what I can’t see.

I’m sure they don’t mean to exclude you – the fact that they wanted you to be with them proves that – but it is hard for others to walk alongside a wheelchair. They block the pavement for a start.

It's always difficult ‘meeting the in-laws’, trying to impress and join in and not be a wet blanket and all this adds to anxiety. But I’d take comfort in the fact that your daughter—in-law’s family clearly want you to be part of all they’re doing. You’ll be on a more even footing when everyone is sitting around together and at the right level, so as to speak. And you don’t need to have fascinating things to talk about: a good listener is worth their weight in gold.

I think your daughter-in-law is always likely to be closer to her mother than to you – that’s normal – but she clearly wants to be close to you too. Everyone is ‘different’ and unique: it’s just that your/our difference is more obvious.

I hope it's a lovely wedding and you thoroughly enjoy the cruise but do stick around here too as it's nice to have you 'on board'.

heyjude

Dear Stickywicket,

thank you for your swift response and encouraging advice; I KNOW all these things you say are right but I seem to be unable to FEEL that they're right; there's a huge knot of panic building up inside. Its happened a lot just lately -- when I'm with other people who are fit and able it seems to really highlight the difference between us and instead of enjoying company and being out I wish I was back home doing my own thing.

I'm sorry to hear you are in a wheelchair and suffering too and I hope I'll soon feel as positive as I used to be very soon.

jillyb1

Please don't dwell on these feelings ; be pleased that you're included and obviously loved as much as you always have been . I'm a RA chairer and make a point of telling whoever's in charge of pushing , where I want to go and which direction to point me in . As Sticky says , there's an art to being a pusher and instructions are often needed ! Talk to your hubby about this and to your son and your new daughter ; they probably have no idea you feel this way and will be anxious to ease your discomfort . Jillyb

lululu

Heyjude You need to buy, borrow or steel an electric scooter to try, you will be able to face the right direction at all times and it will bring you back into the real world. Go on try one and see!

heyjude

Hi jillyb1 and lululu,

I guess I'm not assertive enough and also being over anxious to please and not be a nuisance to people who are taking me out -- I really dislike that phrase "taking me out" -- I want to be taking them out!

I do have a scooter but its a large one which won't go in the car so we use a wheelchair for outings. Its an idea though -- I could get a small scooter which dismatnles easily and then I'd be in control more! Nice one!

lululu

Heyjude Most big towns have a shopmobillity there you could hire one (cost @£5) for a day and just see the difference!

bubbadog

Welcome to the forum heyjude! And I wanted to ask is your wheelchair a self propell one (a wheelchair you can push yourself?) or the small wheeled designed? I would have dropped a comment it's not like your invisable!! you don't get treated like that on here!!

stickywicket

Some good tips there from the others. I also wanted to add that arthritis can easily rob us of our self-confidence and we do sometimes have to work extra hard at restoring it. Most people, in most situations will do the easiest thing. Sometimes it’s up to us to bite the bullet and say eg “Could you turn me round so that I can see it?” I make a joke of it as much as possible (My head’s not screwed on right :roll: ) because it makes the point in a gentle way which doesn’t imply any criticism of the other person.

I don’t use a wheelchair all the time but life is certainly very different when I’m in one. On the plus side, one of my daughters-in-law has gone from never pushing a wheelchair before to being the best, kindest, most thoughtful pusher I’ve got. I hope that happens to you too.

valval

it so hard to feel included when you are with people who have spent years together they just think the same and it so hard to feel included. but you have plenty to say and you have hundreds of pals on here with some strange ideas so you will never be short of something to talk about you should have said the first time they left you facing the wrong way as they will not even have given it a thought who would i bet if you give it some thought before you had to use a chair it would not have crossed your mind i know i would never have thought of it how often do you see push chairs facing wrong way while mums natter. the scooter sounds just the ticket go for it girl and remember just because joints do not work same your brain still there so join in it up to you how much good luck val

heyjude

Dear Bubbadog and others,

its a self propelled chair. yes I am suffering from a massive loss of confidence brought on I think by worrying about keeping up with everyone at the wedding and so badly wanting to be seen for who I am not what I am sitting in.

dreamdaisy

Oh dear, poor you, I am so sorry. I know exactly what you mean about being 'included but left out', it's been happening to me for years and I have developed my own coping stragtegies. When I know I am going to be 'out on a limb' (so to speak) I take a book, MP3 player, paper, generally stuff to entertain me while the fitter ones go off and do what they want before returning to keep the poor old girl company.

There is a skill involved in propelling someone in a chair and it does need instruction from the one in the chariot because those behind just won't realise what they are doing in talking about something you cannot see. You have had some wonderful advice from those in the know on here but I have learned over the years that I have to be a little more assertive than I would otherwise, simply because I no longer live life in the same way as others. Being assertive is not being rude or ungrateful, it's just stating what is what and what needs to be done to improve matters. They are trying to include you, but perhaps steps need to be taken from both sides so that meeting in the middle occurs. It's not easy, it is a delicate situation, and I hope you can navigate your way through to a successful resolution. DD

heyjude

Thankyou Dreamdaisy,

I guess I have to accept that I am different but to me that feels like giving up. Am I fighting a losing battle in trying to carry on as if I am "normal" and thinking that if I try to ignore the wheelchiar and disability everyone rlse will I wonder?

stickywicket

heyjude wrote:

I am afraid these feelings will make me want to stay home alone more and more instead of trying to go out because at home I don't get these negative feelings and am therefore happier within myself.

Now, that would be 'giving up', heyjude, but accepting the reality of the wheelchair isn't. I wonder how long you've had to use one? They take a lot of getting used to mentally. You are lower down than everyone else, you are unable to decide for yourself when to stop, turn or carry on and it is, as you say, very difficult to hold a conversation with people who are behind and above you. What I found terrifying at first was the way my pusher, whoever they were, just took control and did their own thing, even when that amounted to shoving me down kerbs the wrong way so that they were tipping me out :shock: . (Or maybe that was intentional .)

Believe me, accepting the reality of a wheelchair is not 'giving in'. Quite the opposite. It's a means of ensuring you don't give in and continue to get out and about enjoying yourself. It just takes a bit more effort.

dreamdaisy

Yes, we are different to others but I think accepting the use of aids is not giving up - it's adjusting to the increasing demands of the disease. I am 53, I've been on crutches since 2002 and last Christmas invested in a four-wheeled rollator. That has been a blessing as it means I can go a little further and last a little longer and that is important. I know that a scooter and / or a chair is on the horizon but so be it, I'm reconciled to it now. I will still be able to go out and do stuff and that matters - this disease can be very isolating. DD

barbara12

Hello heyjude
And a warm welcome from me,
I have just got the stage of using a wheel chair, so I do understand what you mean, its so strange having the ones behind you talking and looking around, I do suppose its all part off acceptance...believe me I havent got to this yet...I did have my DIL pushing me on holiday and I felt so awkward, but she gave me a ticking off and said she was glad to do it....still didnt help much but there you go.
You have us lot now to talk to, it is so good to get things off your chest, and talking to people that stander is great .
Sending you loads of hugs (((((()))) xx

hileena111

Hi
Welcome to the forum.....I've only been in a wheelchair a few times and did not like it.....hubby needs to take more driving lessons
I have a scooter...not a mini one but not a massive on the road one.
OH puts it in his car, drops me off somewhere and then picks me up a few hours later....if I want to shop on my own.
True....most biggish centers hire out scooters.....give it a try.
We are different yes!!!!
Using a wheelchair/scooter or whatever isnt giving up. Its a coping mechanism....to let you do things you otherwise couldnt do. So my daughter informed me when I was first fighting with myself about giving up" and getting a scooter. She would have been mid 20's then....talk about role reversal
She was right.
Keep coming on and chatting to us
Love
Hileena

liesa

Hi HeyJude

welcome to the AC forum, i have arthritis and its affecting my right hip alot lately, had a total knee replacement 5 years ago this month and its never given me a day off, it gets down so bad at times, there are times i feel i could do with a wheelchair, in fact Steve offered to get one for me only last week, i am grossly overweight now and a lot is due to my immobility but not all... cant help it if i have a sweet tooth...lol, Im on the NHS funded waiting list to have a Gastric Bypass at kings college, should be really anytime now, very scary, but its the only way i can get the weight off to help myself.... if i go in a wheelchair i will become much bigger...
i wish you luck and love HJ on the forthcoming trip, stick with us and i'm sure after a while you'll find a way to be tactful to those around you so you can speak up and get about with help
hope you feel better with all these comments, love to you xxx

heyjude

Thanks to everyone for the advice and words of comfort/advice. This morning I do not feel at all well; cannot think straight; cannot even talk about why i feel this way cos I don't really understand it myself.

dreamdaisy

Rest, stay in bed if you can, sleep if you can, it will pass because all things do. DD

jillyb1

As DD says so wisely , it'll pass and you'll find that things have a way of sorting themselves out . They always do ! Jillyb

stickywicket

Hello again. I'm not sure whether you're feeling unwell in the physical or the emotional sense. If it's your body, just rest up until it feels better. If you're feeling a bit mixed up, unhappy, uncertain remember we're here to help out or just to act as a listening post. Also there is the Helpline. You could ring them, email or PM them. They will listen as long as you need. Just don't feel alone in all this, heyjude.

barbara12

Hi again
I am so sorry you are suffering like this, we do go through all sought's of ups and downs, and it can be hard to deal with, but you will get there I promise, you try and have a good rest and and dont forget we are always here for one another xx

Heather65

Hi Heyjude,
and welcome im sorry your feeling down at the mo ,ther has been lots of very good advice on here and i hope it goes someway to help and there are always people on here who understand what your goig through

dreamdaisy

Hello again, I hope you have been resting and that things are easing. DD

Numptydumpty

Hi Heyjude, I somehow missed this post yesterday, so welcome to the forum from me too.
I'm sorry you're not feeling so good today, DD gave you good advice, as she always does.
I hope you feel better very soon.
Wishing you well,
Numpty