Frustrating: Evening all hope everyone is well... - LUPUS UK

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Frustrating

Kat- profile image
Kat-
8 Replies

Evening all hope everyone is well. Having a bit of a funk just now almost 2weeks since I phone to speak with my consultant still waiting. I've also lost faith in my GP seems to be the only thing they can do is give me more pills. I've been exhausted for weeks so much that I'm either in bed or on the couch. My lips keep going blue especially when I'm walking up the stairs. I'm tired of being tired all the time xx 💤

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Kat- profile image
Kat-
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8 Replies
Spanielmadlady profile image
Spanielmadlady

Hi honey sorry to hear you are still feeling rubbish.i think I'd be chasing consultant secretary to see what's going on .do you have a BP machine or oximeter ? If so think I'd be checking them regularly and document the readings so you can tell them xx

Kat- profile image
Kat- in reply toSpanielmadlady

Hi honey my oxygen levels are between 95-99 so within the normal range BP is a bit confusing but they don't seem to be concerned about it at the minute last reading was 184/98.

How are you keeping xxx

Spanielmadlady profile image
Spanielmadlady in reply toKat-

Sats they dont worry about till below 90 I think....mine are always good but I've been told I'm good at compensating 🤷‍♀️ bp seems high to me but I'm no medic.im ok on the whole had several sleep days myself had nothing in the tank yesterday was running on empty.had dmards bloods and b12 Injection today so it should ease by friday . I found out over the last couple of years that you've got to stand in your own corner and shout ( not literally) to be heard xx

Kat- profile image
Kat- in reply toSpanielmadlady

Yes I'm getting to a point of getting really frustrated. The consultant that's operating on my hands phoned to ask how I was feeling and what to expect before surgery and my doctor doesn't phone. I know that feeling if they keep taking blood we would have nothing left hopefully you'll pick up soon xxx

Spanielmadlady profile image
Spanielmadlady in reply toKat-

I have to have them done every month before they will issue my mmf script.she got it at the second attempt but by time I had my b12 I felt as if I was held together with plasters 🤦‍♀️.it usually takes 3 days to kick in.i was going to clean the bathroom but millie went rolling this morning and stunk so had to have a bath.that was todays energy spent so I sat knitting instead x

Kat- profile image
Kat- in reply toSpanielmadlady

I can remember the last time I was in hospital the student nurse didn't close the canular properly I had blood running down my arm. I've been looking at getting another dog I miss the company xx

Spanielmadlady profile image
Spanielmadlady in reply toKat-

I will be lost without mine theyve got me through alot over the years and are getting on now .I said I'd adopt a Springer next time as I dont want the puppy phase again....chewed door frames etc but it's the vets Bill's and if my son moves away I've no one to look after them if I end up in hospital that will be the deciding factor.they are my only company sometimes especially in the winter when I hibernate. thankfully they dont need baths very often as they swim alot.it was raining so she had her cost on but the smell was still too much xx

Kat- profile image
Kat- in reply toSpanielmadlady

I had a border collie got him when he was 10 weeks old lost him when he was 7 that was 2 years ago the pain of losing him is still here today so anytime I think about getting a dog I remember him so it's still difficult. My daughter is going to uni she might be moving closer it's only 40 minutes away but at the minute she's 10 she's an amazing help I'd be lost without her xx

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