I'm just so sick of being sick!

[weegiemum]

I was in hospital today. I go in once a month to have an infusion for my neurological condition. It's really rare (about 50 cases diagnosed in the uk each year) and today I was lucky that one of the other infusion patients in my bay was a woman about my age (50) with kids the same age (teens and up) with the same condition.

We had a good old moan to be honest. Just about how our lives are so far off what we wanted, how much we hate the things we can and can't do.

I've no feeling in my arms and hands (apart from severe pins and needles). I can't feel my lower legs and feet, apart from the shooting, burning pains. I've no balance and need to use a wheelchair for longer distances, can't feel my lips and tongue and am bone-crushingly tired all the time. My brain is foggy and on top of it all, I unsurprisingly have depression. I'm on 5 different medications, which have side effects.

And this has been going on for 9 years, and probably will for the rest of my life. I have good and bad days and the infusion of immunoglobulin really helps, but I'm just so sick and tired of being .... sick and tired. Dragging myself around the house. I'm overweight as I can't exercise (though have started doing chair Pilates for strength and think I'm seeing a wee difference with that). I can't go for a walk, even with my dh to help me. It's a huge expedition just to go shopping with my girls (or my ds!).

I'm just having a moan, and it feels a wee bit better to have written it all down. Thanks for listening.

Hello 👋 I know how you feel in a way, as i have a two chronic conditions (endometriosis and migraines) as well as being an anaphlatic. Sometimes I have a good old cry as I cannot run around with my two ds, cannot plan anything fun, etc etc. I am writing this from bed after having terrible pain and having to resort to oramorph and the boys putting themselves to bed. I have a wonderful dh too, but occasionally it does just get you down.
My boys always say to me that I'm the best mummy in the world because I'm their mummy and I'm kind. Always remember that you are your children's best mummy too!!! It's totally shit but unfortunately we just have to keep on trucking. A day without pain is a gift.
Some of the things that massively worked for me (I cannot do any form of exercise either) is that I am now doing slimfast, so I get all the vitamins and minerals I need for breakfast and lunch, plus its easy and quick to do when I'm feeling crap. My pain and outlook are always better when I am slightly lighter too. Another one is having audiobooks to listen to, or bbc sounds app. This stops me from spirally down into feeling sorry for myself too. Another one is to hot cleanse my skin, then put serum and then night moisturiser on before bed. This means my skin is lovely, it's selfcare just for me, and the bonus is that often putting makeup on is beyond me, but my skin looks lovely.
Hold on in there, you're doing amazingly 👏👌 xx

(((hugs)))

I’m so sorry it sounds really hard, would you mind me asking what you have, and what your symptoms were, I’m currently in hospital been in a week but in and out for 6 weeks, they are saying one minute autoimmune then giving me a name, then changing their minds, keep saying bloods aren’t right but not specific, feeling desperate. I have lost 3 stone in 7 weeks any insight would be great. I suspect you had a journey getting diagnosed

@weegiemum Hope you are feeling in a better space today

weegiemum what have they diagnosed you with? I have exactly the same symptoms as you & they are saying it is B12 deficiency, the only treatment I am getting is one B12 injection a month. My legs have been numb for nearly 2 years now, I lost the feeling in my lips but it came back, my finger tips are numb as well. Do the infusions help at all?

Hi OP

I am so sorry you have to cope with all that.

Chronic diseases totally suck (pardon my language, but it's true).

The Pilates sounds like a great idea. I need to start something like that.

I have monthly infusions also, for ulcerative colitis, and today I had to start antibiotics and prednisone AGAIN because I visited a lovely lake area and it became very smoky from nearby wildfires (British Columbia, Canada). My asthma freaked out and we had to leave early.

The fatigue I totally relate to. It is mind numbing sometimes, and I am sure others really don't get it.

I find my moods fluctuate. It has helped that my infusions have put my colitis mostly into remission. It sounds like that's not the case for you.

A good moan helps and it works best with someone who understands.

Take care. 💐💐💐

Have you looked into diet options? You should read the How Not To Die book, it’s brilliant reading, factual without being boring and a plant based diet has great case studies on assisting with auto immune diseases.

It’s rubbish, I can empathise, I have MS.

@AperolWhore

Have you looked into diet options? You should read the How Not To Die book, it’s brilliant reading, factual without being boring and a plant based diet has great case studies on assisting with auto immune diseases.

Thank you for the recommendation, I will get that book as I have both auto immune problems AND an neurological condition.

However my consultant told me diet does not help with neurological conditions, so it is unlikely to help OP neurological condition either.

Hello 👋
I'm so sorry to hear what your going through.
I have RA and other issues. I'm so tired and drained from struggling to wake up in the mornings. I'm finding it hard to get dressed and get moving. Like you I've had an infusion and it's helped in a lot of ways, but I wish there was something for the stiffness and fatigue . Sending hugs