To wonder what is the point ? Self indulgent moan enclosed (and some hand squeezing needed)

(14 Posts)
DreamCloud99 Wed 02-Mar-16 14:45:16

I have ME .
I am sick of feeling rubbish .
It's relentless . It's constant . It makes my head feel fuzzy and I forget things . Constantly .

I ache from head to toe . Constantly .

Today I barely can think for myself - stupid things like walking out a shop forgetting to collect my change , not remembering what I'm saying when I'm talking . I feel stupid .

I saw my doctor today to see if she would support me with a letter to help me apply for PIP.

She said I would be better off using my consultant letters as they hold more weight than hers would . I felt rushed as she was running an hour late and I forgot what I was saying half way through . I felt stupid .

And she probably thought I was a scrounger- because I don't look poorly . I took her decline as confirmation I don't deserve PIP and her hurriedness as her being sick of seeing me !

But this has taken over my life . I have no life .

I have twins and they want me to rough and tumble but I can't - because I'm always fucking tired !

I am sick and tired of being tired ! DH is at work and Twins are at pre school .

I'm trying to muster the energy to go and get them but I'm dreading it . I'll have to cook and play before doing bedtime .

I'm feeling very sorry for myself and sat here crying sad

Give me a virtual slap and tell me to pull myself together !

BadDoGooder Wed 02-Mar-16 14:53:12

Ah OP, I won't slap you, but I will give you some flowers!!
My Dad has just applied for PiP, and he was told to use his hospital consultants letters, because they do carry more weight than his GPs!

I'm sorry you felt rushed, I often feel like that at GPs etc. and it's easy to inagine they are not taking you seriously.

Is there anyone who can help with the DCs this afternoon?

You are not a scrounger, you are ill and deserve all the help you can get.

BadDoGooder Wed 02-Mar-16 14:54:34

Meant to add do you have anything from the consultants at all?

If not, the best first step would be to contact them.

DreamCloud99 Wed 02-Mar-16 15:05:10

flowers for the reply smile

I do have consultant letters so I will use those.

I'm just feeling very sorry for myself today blush

RubyRoseViolet Wed 02-Mar-16 15:24:58

Hi op, sympathetic hugs to you. I have been in your situation somewhat. I had a virus several years ago that has left me with longstanding health problems. These are intermittent but bad at the moment, cloudy head, poor co ordination and a really bad stutter. It's horrible.

I SO feel for you. When I was in the throes of my virus I used to absolutely loathe seeing the Dr. It made me feel like a pathetic malingerer and I always had a slight sense that they didn't believe me. It's bloody hard coping with a long term health problem especially one that is not very well understood. You are entitled to have a moan, as often as you like.

Just a thought.....I actually changed Drs, it made a massive difference to me and I felt supported.

BunloafAndCrumpets Wed 02-Mar-16 16:06:13

You are doing wonderfully. I have had CFS and can not imagine it with a child to care for, let alone twins. I am grateful every day that i haven't relapsed.

Have you been referred for help? Bath run a wonderful service at the RNHRD. A graded exercise programme is evidence based and may work for you; ask your GP to refer you if you're not already being seen. Also be open to CBT - often this is about learning to cope with your symptoms, not at all implying that your symptoms are just 'in your head'. I feel for you. Keep going. It will get better.

DreamCloud99 Wed 02-Mar-16 19:22:09

I'm on the waiting list for help but I'm not really sure what they will do .

The boys are finally in bed and I'm crying through exhaustion again blush sad

BunloafAndCrumpets Wed 02-Mar-16 19:44:51

I haven't looked at the evidence for a while now but both graded exercise programs and CBT have been shown to improve symptoms and quality of life in CFS. It's hard when every day is a grind. I found the following things helpful, though like I said, I didn't have children to contend with so feel free to take this with a pinch of salt! You may well already do all this (most of it came naturally to me! I think

-minimise energy expenditure on everything that is non-essential. Eg: If you can afford a cleaner, make sure you have one. Get a tumble dryer rather than hanging up washing. Don't walk places unnecessarily. Keep meal prep simple. Don't push yourself. When you feel tired, listen to your body. Go to bed as early as you can. Spend as much time lying down as you can. You are sick and you need to get better; part of that is giving your body time to heal if you can.

- whilst keeping in mind the above, try to do something every day that you enjoy! Play with your kids ( lie on floor/sofa and let them clamber on you, pretend to be the patient in doctors and nurses, maybe watch telly or play a game together etc, low impact stuff?) or eat something nice or whatever.

-try to get help from experts. Push push push for referral from GP and if you can afford it, try private.

Is your family supportive?

Hope you're ok this eve thanks

Marzipants Wed 02-Mar-16 19:52:17

Oh you poor thing. Crying is supposed to release hormones that relieve stress so a good cry will do you no harm. And it's not self indulgent to cry when you're stressed, it's self preservation.

My mum has ME and usually takes a list of what she wants to talk about with her when she goes to the doctor. She sometimes writes the doctor a letter to read beforehand and then they go through it at her appointment as she gets flustered when she's on the clock.

Good luck, you're doing marvellously to get twins to bed. I'm well and putting my DC to bed is bloody exhausting. Lots of flowers (and HUGE respect) for you.

Pebbles16 Wed 02-Mar-16 20:04:10

Hello OP flowers for a start. I am so sorry you are feeling like this but you are doing amazingly well. I suspect your GP knows her letter holds little weight compared to the consultant (which is dispiriting). I can almost guarantee that she isn't judging you for "not looking" poorly. Go for PIP. It's a pita and some days you will want to give up.
Have a good cry and feel better

lalalalyra Wed 02-Mar-16 20:11:59

Your doctor wasn't fobbing you off - the way GP letters are treated by the PIP process is awful. My friend has Narcolepsy and her GP has witnessed her cataplexy numerous times. They completely ignored his letter, it was an absolute waste of his time writing it.

She was right about your consultants letters, they do hold more weight. So don't write her off, she was trying to help.

Shiraznowplease Wed 02-Mar-16 20:26:55

I am thinking of restarting weight watchers I weigh 16 stone and am desperate not to but I have heard bad things about smart points. I previously did pro points successfully. Has any one got any feedback on it please ?

Shiraznowplease Wed 02-Mar-16 20:27:56

Sorry posted on wrong thread!

AliceScarlett Wed 02-Mar-16 20:30:18

Have you heard of spoon theory?

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