Need to moan

[Jo Sutton]

I am having a terrible few days!

I started with a pig of a cold on Thursday. Couldn't do anything except lie in bed and cry because I couldn't sleep and I just wanted the inability to breathe through my nose and the headache to go away. OH gave Mum the basic care (meds, food etc.) and she had carers in the morning to get her up, but today she started shouting for me every few minutes. When I hauled myself out of bed, holding a hanky over my nose to stop my germs spreading to her, she said that no one had told her I was ill - apart from every time OH sees her which she doesn't remember - and I should stay here, but she wants to go home. OH can't deal with that sort of thing, so I had to get out of bed every time she called, which was every half hour or so, and persuade her to stay here with us on 'holiday'. (We're not on holiday).

On top of that, I've been in chronic pain for ten years. Recently requested a second opinion, but the consultant took one MRI scan and said he could see nothing wrong with me and there was nothing he could do. Basically ... sorry, Jo, but you're going to be in chronic pain for the rest of your life, unable to travel or socialise for more than a couple of hours, but hey ho. I can't be bothered to do the multitude of tests that might actually tell us what's wrong with you.

And then, to top everything off, I have just been reassessed for PIP, and the DWP have decided that I can walk a lot further than I actually can, and so I am losing all my disability benefits, and probably my Blue Badge as well. Yes, I can request a mandatory reconsideration, and then go to appeal at a tribunal, but I have no medical evidence, and I'm sick and tired ... nay, exhausted ...of fighting. Fighting the care system, fighting the benefits system and fighting the NHS. For Mum and now for me as well. I just don't have the energy at the moment.

Feeling really low. It's probably the cold, but I'm just so tired. Two years of looking after Mum 365/24/7 and I'm currently waiting for the SS to arrange respite care for her so that I can have a break.

Sorry to moan at you all, but I'm just in despair at the moment. Thanks for reading.

Hugs

Jo xxx

 

[Amethyst59]

Oh, Jo. Poor you...and you have helped me so much, and now I feel I can do nothing in return. Except sympathise...which I certainly do. The cold will go. You won’t feel so deathly tired ...and then...and THEN, you appeal the PIP decision and you go back to your GP and start the round again until you get an answer. Until then....rest while you can, and I send a big hug. (But put a paper bag over your head, cos of the germs) (and I hope you were feeling up to my very poor attempt at humour).

 

[Prudence9]

I'm so sorry you feel so awful and down, tell yourself it's the weekend and apart from what you have to do for your Mum try to put the rubbish out of your head until you feel well and stronger to deal with it, you can't do anything today or tomorrow so to hell with it all.

Hot toddy, hot water bottle and I hope you'll accept a hug xx

Sorry I'm not much help...
Hope you feel better soon

 

[HillyBilly]

Oh my @Jo Sutton what a time for you. I do hope you start to recover from your cold soon. Also that respite happens soon and then you can start to deal with your own issues x

 

[Jo Sutton]

Thank you all so much! I got over the crest of the cold in the early hours of this morning and, while I am still bunged-up, sneezing and coughing and drinking Benylin like it was [insert favourite tipple here], I am feeling a lot more like myself. The headache has gone and I can think much more clearly.

@Amethyst59, I'm ready for your hug. You'll be able to spot me easily - I'm the one in the corner, coughing, with a bag over my head Thank you so much for that, and the humour. Made me smile, which I needed

@Prudence9 hugs right back at ya! The hot water bottle is a permanent fixture for my back pain, but the hot toddy worked wonders - husband's recipe: equal quantities of whisky, lemon juice and honey, warmed up in the microwave. It may not help the cold, but after 2 or 3 of those, you don't care any more

@HillyBilly thank you for caring. Just knowing that there are others out there who understand makes me feel a whole lot better.

@Carmar you're right, we keep hearing of cases ... many of them worse than I am ... of people losing benefits who no one in their right mind would think could work or wasn't disabled. To be honest, I was expecting a downgrade, because that's what the government are doing at the moment, but to have it all taken away was a real blow. Thankyou so much for caring and taking the trouble to respond.

This forum, and the lovely people on it are my lifeline. Apart from being a great source of knowledge and information, just knowing there are other people out there who, despite their own challenges will take the time to post a few words of comfort, makes all the difference.

Thank you all so much!

Love and hugs

Jo xx

 

[Prudence9]

Oh Jo so glad you're feeling better xx

Will try your husband's hot toddy - I don't have a cold but who cares!?

Look after yourself xxx

 

[Amethyst59]

I do have a cold. I think the paper bag might be porous..but, I will have a hot toddy tonight. My late husband used the same recipe, whisky, honey, lemon, hot water. Delish! Worth having a cold for. So glad you are feeling better...bless your heart.

 

[Amy in the US]

Jo, I've not got any brilliant advice, or really none at all, but I'm sorry you have a wretched cold and hope you continue to feel better from it.

I can't even imagine what it must be like to care for a PWD when you have chronic pain, plus have to battle the idiot powers that be. Understatement alert: it must be very wearing.

You are definitely a kind presence on TP and while I know we all have our down moments, I'm sorry for yours.

 

[gene genie]

Oh, Jo. Poor you...and you have helped me so much, and now I feel I can do nothing in return. Except sympathise...which I certainly do. The cold will go. You won’t feel so deathly tired ...and then...and THEN, you appeal the PIP decision and you go back to your GP and start the round again until you get an answer. Until then....rest while you can, and I send a big hug. (But put a paper bag over your head, cos of the germs) (and I hope you were feeling up to my very poor attempt at humour).

I'm feeling so sorry for you, it's not fair that you have so much on your plate.
When you've recovered from your cold I suggest you insist the as give you at least 1 day a week daycare respite more if you can get it. Also Google benefit forms help in your locality I'm sure that there will be a voluntary organisation that can help you with your claim to dwp, lastly but not necessarily least see your G. P. Again, ask could it be fibromyalgia, I have this, and it is the terrible, the pain headaches tiredness just the tip of the iceberg,. All this on top of caring G no wonder you feel shattered.
Sending a hug and a prayer you feel better soon.x

 

[Jo Sutton]

@Prudence9 Enjoy!!!

@Amethyst59 Argh ... sorry you have my cold. It must have escaped through the eye holes in the bag. I knew I should have just stumbled around not being able to see Enjoy the toddy ... they do help ... really!

@Amy in the US Bless you for your kind words, and right back at ya. You were so kind to me when I first posted, I hope I can help spread that further. We all need a little kindness in our challenging lives, and heaven knows it's few and far between.

@gene genie Thank you so much for the sage advice. Hubby is furiously watching online lectures on the causes of pain and is compiling a list of what it could be. I know doctors hate it when people diagnose themselves, but no one is doing it for me so we have to. I plan to go back to my GP as soon as I have a comprehensive list of potential causes and, strangely, fibromyalgia is top of the current list. I'd be interested in your experience, but I'll PM you, as I'm sure no one on here wants to know all about our ailments LOL

I've managed to spend some time with Mum today, to make up for neglecting her for the last three, so I'm improving rapidly. Caught hubby sneezing earlier, though, so it may be my turn to make the hot toddys ...

Love and hugs to you all

Jo xx

 

[gene genie]

Messaged you. X

 

[Jo Sutton]

I saw my GP yesterday and went through everything, and fibromyalgia was top of her list too. She is running every test under the sun to rule out everything else, so I'll have to wait a few weeks for a diagnosis but, hey, I've waited ten years, so another few weeks won't hurt.

I'm relieved that she is taking me seriously and hopeful that I'll get a diagnosis as that may help with my PIP appeal. But I'm also very worried that it is fibromyalgia, as @gene genie knows, it's a horrible condition and there's no treatment.

Still, things are slowly moving forward and I'm seeing the CAB through the Carers' Centre next week to get the appeal started, so I'm in a much better place.

Thank you so much, everyone, for your help and support, with this and with everything else that I've posted about in the last fortnight. It really has been a rollercoaster, but I'm feeling a lot more positive about everything, and I should be getting some respite soon, so things are definitely looking up

Hugs

Jo xx

 

[gene genie]

Glad to hear you are going to be able to get a little respite, and that you seem to be going forwards with the g. p. checks.
Hopefully the results will fit down something other than fibromyalgia but if it is that yes it's true it bloo**awful, hence I'm awake at this time 2.50 am with restless legs, neck ache aside, from having a terrible chest infection.
Wishing you all the very best.