Just a feeling sorry for me post, yes AGAIN!!!

Nala66 1 day ago

3 replies
43 subscribers
174 views

Things have deteriorated for me , I don't want to go into past details as I'm sure many of you already know .

Besides I'm just to tired and drained to wanna write it all down.

I also realise I might waffle sooo I apologise in advance.

I was mostly bedbound, I could with a bit of help move from the bed to the commode which was one and maybe half a step away and make it back , then it started off as I could get off the bed, to the commode but couldn't get back on the bed , yes I struggled but it was still some independence and I'd get out of bed at least every other day , then bam!! Suddenly the little bit of independence I had, went! I could wriggle so I was sat on the end of the bed and shuffle to the commode ,, that was fine until I realised I needed a push to get up off the commode , ok I'd deal with that but then.... no matter how hard my wife pushed my back end there was no getting off the commode and my stepdaughter had to be called , so we had a gantry hoist installed, getting used to the sling part is awkward and the other day , urgency had me trying to hurry off the bed to the commode without the hoist , I couldn't shuffle and we struggled to get the hoist on me because that was it I couldn't move , thankfully with a lot of pushing etc we got me back on the bed , this morning I needed the commode, we managed to get me on the commode and off but I now feel a useless lump , I can just about move my legs in bed but they can't hold any weight, I can no longer get myself on the commode so if my wife isn't here I'll be going to the toilet in the bed , I already have a catheter.

I'm just feeling gutted because of my indepence disappearing .

I can no longer wash myself or dry myself and have to rely on my wife to do everything, even make a cup of tea.

I need oxygen to breath and because of SVCO I sound husky and people struggle to hear me .

I'm just tired and struggle to sleep, the nurse specialist doesn't want me napping during the day so I'll sleep at night, huh I've not slept during the day in months but I'm still not sleeping at night so what's the point?

Sorry this is a pretty useless post

chellesimo 1 day ago

Hi Nala66 please do not apologise, it is not a useless post at all. Your situation sounds awful for you, no one wants to find themselves in the situation you are in, but the truth is it can happen to anyone of us. I can only imagine how frustrating this is for you. My heart goes out to you.

Please do come here and rant as much as you want! I hope it helps to get your feelings down in words.

Chelle

Try to be a rainbow,in somebody else's cloud

Maya Angelou

Xena WP 1 day ago

Hi Nala66

Not a useless post, a great big hug straight to you. Like Chellesimo I think your situation is awful. I see along with everything you are not sleeping that won't help your thoughts. You are a strong person (I read your bio) you have been fighting and adjusting for two years so it is no wonder you now have battle fatigue. On a practical note I expect you have incontinence pants they will help with any leakage in the time it takes to get to the commode and retain a little dignity.

Personally I respect your honesty as we are all at different stages of our journey's and mainly try to put a good face on it for our family, friends and others on earlier stages of their journey, so you have helped us by showing its ok to be truthful and have a safe place to vent. Also like you on ,my journey my husband has had to help me a lot in ways I have hated to ask (he also makes the tea!)

Hope you can get some quality sleep and comfort.

Thinking of you..........

XenaWP

anndanv 9 hours ago

Hi Nala, You have every right to moan and groan, so carry on whenever you like. I have lost a lot of the independence I had this time last year and it is horrible but still not half as bad as the position you are in. I am so pleased you have a loving wife and daughter to support you as I am sure you would do the same if one f them needed support.

My husband is going nto hospital overnight tonight to have a biopsy done under a general anaesthetic. We won’t know the result until into the new year because places are closed or have skeleton staff. He had bowel cancer Sept 23 and surgery seemed to fix it but this is in the bladder. With every bone in my body I wish it was me going threw this because I know I can cope with whatever they throw at me.

I know it must be difficult for you but all the more reason to put a smile on your face, so your family enjoy Christmas and then come here to moan all you like. We understand!

Love Annette x

Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!