MY world is changing

[Beeper]

Hi not been on for a few days, it has all been happening here. Went to the RA doc for my check up and told him how down hill I have gone in the last year from no sticks to two and a scooter for out door trips. My knees have gone, had x rays waiting the results to see if I need two new knees to go with my hips and shoulder. Went out for the day with the family on Sunday, had a get time. Got to see my employer doctor next week for a accessment to see if fit to work not sure what the out come will be if the want to to go. I'm 60 in July and fell it's time to pack up and rest. My son told me on Monday he is moving out, well he is 30 and about time he left the nest but will miss his rent and all he does for me, my wife does very little for me she thinks I should help myself. She hates being around ill people, I am just a pain to her. I don't know what I will do, can't tell him how much I will miss him because he might stay for me and I don't want him to feel he has to stay for me. He needs to get a life of his own. So feeling down at the moment with all this change.

[Wonkywarrior]

Hi Beeper!

I am new on here and just wanted to say when change is coming it can be scarey and especially when change comes because of the RA its doubly hard.

You need to allow yourself to grieve the loss of the ability to walk without support. I have a power chair and a sassy frame for indoor hobbling now- I look the bees knees with that!

Re your son moving out, perhaps its time to apply to the council for some direct payments. You could also consider canine partners. I had one for a couple of years before my baby was born (she is now 3). He was smashing.

I find the loss of things hard to cope when its caused by the RA. I find it better in my mind to think that I can go onto to this now with my life instead.

Direct payments does not depend on you getting any benefits or allowances.

direct.gov.uk/en/disabledpe...

You get to employ whoever you like.

caninepartners.co.uk/

Its a fantastic charity that will take you and train you to train and work with a canine partner. Its a brilliant scheme. I loved it, learned about doggies and people stopped staring at me and instead of "look at that lady" they said "look at that dog!"

Perhaps something to consider after this lot of surgery?

All the best to you, when are you seeing the surgeon?

[Beeper in reply to Wonkywarrior]

Thanks for the advice, don't know when seeing the surgeon waiting for x-ray results.

[Wonkywarrior]

BTW- I am Jennifer Warrior, apparently someone is already wonky...! lol!

[Hidden]

Hi beep.so sorry your feeling so low at the moment, sometimes its like one thing after another.Your RA doesn't seem that well controlled at present so lets hope your consultant can sort you out there.

Your son moving out is just adding to your misery at the moment, its so hard you want him to go and on the other hand you don't. Like you say he will leave eventually but perhaps now doesn't feel the right time, but will there ever be a right time? I doubt it as I know I would feel the same my sons only 16 and already I dread that day.

I'm sorry your wife doesn't understand your RA that's a real shame as you need all the support you can get at the moment.

We understand perfectly so come and chat to us anytime Beep.

Take care and I hope you get things sorted soon.

mandxx

[Tricia-P]

Hi Beep

Sorry to read your abit down in he dumps, with this lovely sunshine we're having can you get outside take in a few rays but be careful of burning, see Lyn W blog. have you spoken to the NRAS helpline you sound like you have some unburdening to do, maybe your wife needs to know more about RA she may then understand your not making it up.

I don't know much about disability payments but Rich -C on the main forum works for CAB as well as having RA and he has helped me with advise on filling in forms for DLA. As Mand has said keep coming on here and we can have a chat. Kep us posted when you see the doctor.

Best wishes and a hug

Tricia P

[Hidden]

Hi Beep

It's bad enough that RA keeps you guessing as to what the day will bring, without other things happening around you. It must be a bit scarey. I think your wife needs someone to have a word with her about RA and it's effects Does she not want to know, or just doesn't understand? My brother has parkinsons and his wife does nothing for him. Tells him to cheer up it could be worse and only does things for him under sufferance! When he is having hallucinations from his tablets, she thinks he is making it up and doing it for attention. It's a problem for some people to face illness and sickness and empathy does not come easily, as we all know!

As Mand says keep blogging and posting on here and you will always be listened to.

Take care

Julie x

[Gina_K]

Hi Beep,

Sorry to see you are feeling a bit down with changes, sometimes when one of your kids moves out you can have a better relationship, because you have to plan to see each other and you may get on even better when you are not living with an adult child. Very important to tell him how much you have appreciated his help and tell him you love him. I know that can be quite difficult, but I guarantee you, it will mean a lot to him! The thing with feeling down and having a bad day or few days, is try and accept that all days are not like this and every day is different. Loss of mobility is very scary, but you still have a lot going for you 60 is not old and there are plenty of interests out there for you when you are ready. Your wife sounds like she has decided to get on with her own life, you are probably in a long relationship, where behaviors are taken for granted. Try and set some time to sit down with her and ask her how she really feels. I don't want to give too much advise because I'm not qualified, but am in a long (very long!) relationship and think you have to keep working at communication. Take Care & be good to yourself

xx

[Hidden]

Hi Beeper,

I'm sorry to hear that things are so tough at the moment - it seems that things are happening on all different fronts which is difficult.

My rheumy hospital dept has it's own x-ray unit so you have the x rays and then go straight back to the consultant who can view them on his computer and discuss them with you. Must be frustrating to have to wait and then go back again and still not know what's happening

I understand your dilemma with your son - in the absence of an empathic wife he has been a vital part of your support network. It's difficult to both rely on an adult child and to want them to feel able to leave too - and the financial implications too. He needs to be able to leave the nest and spread his wings and you need to be able to let him go - but it does leave you face-to-face with your relationship with your wife.

I do have personal experience of this as a long-time ago I used to be married to someone who decided that he 'didn't want a sick wife' and left me with very small children - but you know what, I'm far better off out of it and happier too. We shouldn't have to apologise for existing and having a disease. It's really important to be supported and have a network of folks that we can call on for assistance - think about how you can build this for yourself. Do you have a local NRAS Group that you could get involved in? It would also be really helpful to talk to someone outside your situation - a counsellor or therapist - your gp can make the referral and you should seriously consider it.

I've started to buy in services (cleaner, shopping delivered, handy-man etc) to ensure that my daughter feels able to leave home and knows that I'm not struggling on my own. It also preserves my feelings of independence. I appreciate that you will miss your son's company and understanding and it's replacing this on a day-to-day basis that's going to be a challenge - and feels like the loss that it undoubtably is.

Keep on talking to us on here - don't be alone with these difficult life changes, there is always a warm support for you here

Cece x

[Hidden]

poor mr beeper.. dont rush any desperate ideas through stay at work! on sick leave...!! then try for reduced hours... some people.. are no good at support during illness, sorry your wife is like that could you both try for some counselling.. know thr psych ladies on here know lots of useful stuff.. im still waiting for my nhs trust to trt to organise it..... we will support it.. cece.. above my wise owl lady x

[Hidden]

Hi Beep

Sorry you're down but you are facing such a difficult time at the moment so give yourself a little leeway. My husband is much like your wife I'm sorry to say but that is just the way some people are and no amount of 'RA knowledge' changes them. NRAS have several publications available that might be worth getting hold of, in particular one called "Living with RA". Give NRAS a call and they will send you a copy.

Your knees may not require surgery, so don't be too despondent just yet. It sounds possible that your RA meds are not doing their job and keeping the RA at bay, same position as me really! Perhaps a review of meds would in the circumstances be more beneficial to your overall wellbeing than knee replacement. I too have 'dodgy' knees which can be improved by oral steroid so I suspect also if I was given more suitable RA meds the impending surgery could be held back a while longer.

Keep posting Beep and chin up mister,

Lyn x

[Andrea_Shapiro]

Hi Beeper, you know that you have support from everyone here (and we can't get better than other people with RA egging you on!). We've all felt isolated, as if we've lost something, or someone. Everyone loses patience with RA; they can't possibly imagine the pain associated with it & appreciate what it feels like on a daily basis. I often say to my husband, "imagine your worst headache, and then double it over my body, and it still wouldn't be enough"

[Hidden]

Hi Beeper- keepgoing, dont give up, life is a journey which takes round some difficult bends at times. As Andrea said- You are not alone- you are part of an e- RA community which trully does empathise and understand. Keep posting. We may not have magic wands but we care because we wear the same/similar T shirt.

Beep Beep !!! ( thats u in your scooter !!!) coming through !!!!

Fiona x

[Hidden]

Hi Beeper

Sorry to hear how down you are feeling right now. In my house, change of any type, evokes lots of anxiety and fears which feel really overwhelming so I really empathise with how you feel.

Wishing you a better day today x