I am finding that the NHS and it’s subsidiaries are crawling all over me and I’m getting rather embarrassed by it. I have had two visits so far from OH and they have delivered all sorts of equipment and put up a hand rail on the stairs. I am having a mobility assessment with excercises on Monday. Just had a call and now they want to put grab handles by the back door and another rail on the other side of the stairs. They are calling back later to speak to Mark about him having a carers assessment. They want to install Careline and want to speak to Mark about that later today. I had a call yesterday making an appointment for me to go in for a measure up for a new wheelchair. They are sending a blue badge application. They are sending Mark a carers card. Papworth Trust want to install a wet room. My consultant is referring me for counselling. This morning I had a text message from the GP’s surgery inviting me in for a free health check. Oh I just want to get better and go back to work…it’s easier! By the way, I really don’t want Careline. Pat
Take a deep breath. It all seems like a lot, but you’ll be grateful when you need to use the equipment x
can completely understand the overwhelming attention. the past 18 months have been very difficult for me-my whole life has changed. going from being able to drive and aerobics weekly to speech and sight difficulties, mobilty changes-walker to manual to power chair, carer input. massive ot and physio help-stairlift and ramp,wet room and thats just the tip!
i really struggled to get my head round all the help and did tell them to back off for a while just til i got my head round it all. the past 3 months have been especially hard with severe emotional lability-i didnt recognise myself at times. fortunately i have a brill gp who understands my need for independence but also recognises i am in a bad way and has supported me through all this. i am own with 4 kids and no family nearby by…
all i can suggest for you is to accept the help as u can-it will make your life easier for the future. re careline-i guess thats similar to what i call carecall. they wanted that for me too. i wasnt keen but what i did do was promise to keep my mobile round my neck and got phone numbers of neighbours either side in there. (one works days and other works nights) also got keysafe at the back door-its a good idea.
maybe u can let the helpers ‘know’ that you do appreciate all their suggestions of help but they just need to give u time to adjust?
I don’t have direct experience, but when my late dad was seriously ill, we did have what seemed like a neverending circus of strangers coming and going, so it felt like our house was not our own. And poor Dad was exhausted trying to deal with the constant flow of visitors, even though they were all, in their different ways, trying to help him. We had oxygen bottles, physiotherapists, specialist nurses, district nurses…
None of this was MS, I hasten to add. Quite different illness, but same problem!
Hi, I expected to read that it was all a dream!!!
Personally i have had and still am getting, quite a lot of input from the NHS and council services.
Many other folk tell me how well I do, whilst their areas are poorer and they get little or no help at all.
But I do understand how it is overwhelming for you.
If you dont want careline, then you dont have to have it. I dont and have had difficulties when hubby is out and luckily there was either my mobile or the landline close enough for me to call for help. Tell them you`ll always have the mobile on your person!
When things are more settled, you`ll reap the benefits of all the input.
know just how you feel,last october i had a very severe relapse,that left me bedbound, i got sick of seeing people coming and going,in the end i told them that i was very grateful but it was wearing me down,and making me even more ill,i just wanted to be left in peace,so they listened and backed off a little,what makes me cross is when they came to asses me, they said ‘we normally only see older people’ as though i wasnt allowed to be seriously ill,because i am not an oap,same when my other half enquired about respite, they said it wouldnt do me any good,as they would have to me with the oaps !!!so guess what i stayed at home,and managed.
Yes Pat, it is a huge change from our former lives.
But live we must, the best way we can. You`ll be ok once everything is in place.
Hi Pat There was a bit of predictive text but I think I got the gist of it. You don’t want Careline which works through a landline phone and you don’t have a landline. If you don’t want it just tell them that, I have a landline (for broadband) but I do not use it to phone, I only use my mobile for phone calls. Well done on claiming dla, as for this money you can use it as you wish, if you don’t want a landline don’t get one, after all it will cost you money. Maybe you can think of a better use for this money. I’m not 100%sure what Careline is tbh, think it might be something that let’s you contact someone in an emergency, is there something similar you can use which doesn’t involve a landline. Cheryl:-)