A Good Old Whinge

SJC

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Oh am so fed up!! Nine...or is it ten, darned weeks I have spent 95% of my time on my bed. I get up and move around every couple of hours or so to keep the old bones moving and use my muscles, to get a bath, make a drink or a snack. I couldn't find my original thread where I explained what's going on with me so forgive me for those who don't know. (I have acid reflux, IBS, fibromyalgia, kidney disease, and a cyclic mystery illness that my docs think might be M.E because they have exhausted other avenues...for those who didn't know this).

I am in the process of being referred to an M.E clinic for diagnosis but there's a stumbling block now. They have told my GP they want to know from my urologist if my kidney problems could be causing the symptoms. I had an appointment on 3rd June so thought I could ask him questions then and pass on the info to GP. Trouble is, I have been having these episodes for about five years. I only had my kidney removed two years ago, and before I did my kidneys were perfectly normal. Only been diagnosed with CKD for two years. So, in my eyes it can't be the case. Told GP this..he agreed but said we have to go through the motions anyway.

Guess what? For the fact I am so very nauseous every single day, my Gp has re-referred me back to a gastroenterologist, ( didn't do any good last time). They sent me an appointment and it fell on the same day and within half an hour of my urology app. So I had to ring up and re arrange the appointment. They put it back to 30th June. Groan! Then a few days later I got a letter from urology telling my my appointment had been cancelled and my app is now in August. So, I hadn't needed to re-arrange the gastro appointment at all!!!

I told my GP and he just tutted. There I am in his surgery, same as once every week, in tears, asking for help to tell me what's wrong with me. He just tuts and doesn't realise that every single day of nausea, fatigue, pain etc etc seems like a week to me. Why couldn't he pick up the phone and state my case to the gastro or the urologist? Don't know.

I rang gastro this morning, told them how poorly I felt, about the re-arranged urology app and hey presto, I will now be seen on 6th June. See? My doc could have done that on the day I was in surgery.

I am fed up of feeling this ill. I am fed up of feeling lower in mood because of it all. I am fed up of laying on my bed, afraid to move too far because I feel so weak and sick.

Apart from low vit D which I am being treated for, this prediabetic thing, and getting very weird spells that I am now told could be low BP, (feel like can't breathe, shake from head to foot, legs go like paper so daren't walk around), I don't feel I am any further on than I was nine weeks ago.
Worst of it is that some days I feel so ill I honestly daren't leave the house and yet I am going to have to make appointments whether I can do it or not. Some days I just feel like curling into a ball and putting two fingers up to the NHS.

I couldn't make a GP app the other week as felt too frail to do it. I rang in and asked if my Gp could visit me. Absolutely no way. Receptionist said you had to be bedridden. I said I am 95% that. I think she meant you have to be dying! No home visit. I had to have a telephone consultation instead.

I needed to ask my GP a question the other day. I rang in and asked if he could phone me. Nope! My Gp doesn't do phone calls! Hang on...when you phone at 1.30 if you haven't managed to get in at the docs in the morning, you get a telephone call from a GP to ask what it's about. But they don't do phone calls? She said she'd pass my question on to my Gp later that day. That was three days ago and heard nothing back.

Sorry for this whinge. If you have actually read it all then I commend you for your patience. I just thought it might do my head some good to share. :(
 
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Heathenlass

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Hi there,
No wonder you feel at the end of your tether! I don't see your post as a whinge at all, but a healthy offloading which we all need to do at times :)

I don't have any constructive advice other than to be good to yourself and keep in touch with us for support, but would like to send you a big virtual (((((((((((((((HUG)))))))))))))

Signy
 

SJC

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683
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Hi there,
No wonder you feel at the end of your tether! I don't see your post as a whinge at all, but a healthy offloading which we all need to do at times :)

I don't have any constructive advice other than to be good to yourself and keep in touch with us for support, but would like to send you a big virtual (((((((((((((((HUG)))))))))))))

Signy
Aw, thanks Signy. People are so friendly on this site. Every little helps. :)
 

zand

Master
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10,784
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Yes, thanks for sharing. Well done for finding the energy to push for an earlier gastro appointment. I hope you get to see someone really good at their job and fully interested/committed to helping you, yes, there are some even in the NHS, or maybe I have just been lucky on one or two occasions.
 
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SJC

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Yes, thanks for sharing. Well done for finding the energy to push for an earlier gastro appointment. I hope you get to see someone really good at their job and fully interested/committed to helping you, yes, there are some even in the NHS, or maybe I have just been lucky on one or two occasions.

Thanks zand. Seems to me our local hospital and GP surgery are stretched to the limit. Don't actually blame them..blame the government. When I was in casualty the other day (collapsed), I overheard a telephone conversation by the unit manage I presume. She was saying that three of the casualty patients that needed admitting had already passed the threshold for time. She said that on one of the wards a nurse couldn't even get hold of a doctor to ask his opinion about an admission because he hadn't been answering his bleep. No beds...lack of staff. They will pay dearly for missing the timeframe stipulated.
 
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Bluetit1802

Legend
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Whinge away. That's what we are here for to help and support each other. Writing it all down often helps. I have nothing constructive by way of advice but wish you luck with your appointment and sending you a virtual hug.
 

SJC

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Whinge away. That's what we are here for to help and support each other. Writing it all down often helps. I have nothing constructive by way of advice but wish you luck with your appointment and sending you a virtual hug.
Thanks :) x
 
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Oh am so fed up!! Nine...or is it ten, darned weeks I have spent 95% of my time on my bed. I get up and move around every couple of hours or so to keep the old bones moving and use my muscles, to get a bath, make a drink or a snack. I couldn't find my original thread where I explained what's going on with me so forgive me for those who don't know. (I have acid reflux, IBS, fibromyalgia, kidney disease, and a cyclic mystery illness that my docs think might be M.E because they have exhausted other avenues...for those who didn't know this).

I am in the process of being referred to an M.E clinic for diagnosis but there's a stumbling block now. They have told my GP they want to know from my urologist if my kidney problems could be causing the symptoms. I had an appointment on 3rd June so thought I could ask him questions then and pass on the info to GP. Trouble is, I have been having these episodes for about five years. I only had my kidney removed two years ago, and before I did my kidneys were perfectly normal. Only been diagnosed with CKD for two years. So, in my eyes it can't be the case. Told GP this..he agreed but said we have to go through the motions anyway.

Guess what? For the fact I am so very nauseous every single day, my Gp has re-referred me back to a gastroenterologist, ( didn't do any good last time). They sent me an appointment and it fell on the same day and within half an hour of my urology app. So I had to ring up and re arrange the appointment. They put it back to 30th June. Groan! Then a few days later I got a letter from urology telling my my appointment had been cancelled and my app is now in August. So, I hadn't needed to re-arrange the gastro appointment at all!!!

I told my GP and he just tutted. There I am in his surgery, same as once every week, in tears, asking for help to tell me what's wrong with me. He just tuts and doesn't realise that every single day of nausea, fatigue, pain etc etc seems like a week to me. Why couldn't he pick up the phone and state my case to the gastro or the urologist? Don't know.

I rang gastro this morning, told them how poorly I felt, about the re-arranged urology app and hey presto, I will now be seen on 6th June. See? My doc could have done that on the day I was in surgery.

I am fed up of feeling this ill. I am fed up of feeling lower in mood because of it all. I am fed up of laying on my bed, afraid to move too far because I feel so weak and sick.

Apart from low vit D which I am being treated for, this prediabetic thing, and getting very weird spells that I am now told could be low BP, (feel like can't breathe, shake from head to foot, legs go like paper so daren't walk around), I don't feel I am any further on than I was nine weeks ago.
Worst of it is that some days I feel so ill I honestly daren't leave the house and yet I am going to have to make appointments whether I can do it or not. Some days I just feel like curling into a ball and putting two fingers up to the NHS.

I couldn't make a GP app the other week as felt too frail to do it. I rang in and asked if my Gp could visit me. Absolutely no way. Receptionist said you had to be bedridden. I said I am 95% that. I think she meant you have to be dying! No home visit. I had to have a telephone consultation instead.

I needed to ask my GP a question the other day. I rang in and asked if he could phone me. Nope! My Gp doesn't do phone calls! Hang on...when you phone at 1.30 if you haven't managed to get in at the docs in the morning, you get a telephone call from a GP to ask what it's about. But they don't do phone calls? She said she'd pass my question on to my Gp later that day. That was three days ago and heard nothing back.

Sorry for this whinge. If you have actually read it all then I commend you for your patience. I just thought it might do my head some good to share. :(

You have every right to whinge ( it's just offloading really) away and for so many reasons, you must feel like :banghead: if you had the strength. Any chance you could write a letter to GP, explaining the problems you are having with illness and surgery and get it hand delivered( so it's there in black and white). by a family member, a good friend or neighbour? I do wish you well and I hope something positive happens for you very soon. Take care x
 

SJC

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You have every right to whinge ( it's just offloading really) away and for so many reasons, you must feel like :banghead: if you had the strength. Any chance you could write a letter to GP, explaining the problems you are having with illness and surgery and get it hand delivered( so it's there in black and white). by a family member, a good friend or neighbour? I do wish you well and I hope something positive happens for you very soon. Take care x

Thanks so much for your input. My GP says he's literally done all he can do now. He only sees me now to see how I am managing and to check my weight. A letter is a good idea but I don't think it will do anything really. I wish I had a family member that cared enough to speak out to be honest. Sometimes when someone close gets involved it can shake things up a bit. My dear old mum was like that before she died. She used to say, 'if you want anything doing in this life, make it happen, shout loud'. She would have been with me at the docs by now I think and told them to get their finger out...and the hospital :)
 
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Thanks so much for your input. My GP says he's literally done all he can do now. He only sees me now to see how I am managing and to check my weight. A letter is a good idea but I don't think it will do anything really. I wish I had a family member that cared enough to speak out to be honest. Sometimes when someone close gets involved it can shake things up a bit. My dear old mum was like that before she died. She used to say, 'if you want anything doing in this life, make it happen, shout loud'. She would have been with me at the docs by now I think and told them to get their finger out...and the hospital :)

What area do you live in? just wondering if anyone on the forum would live close enough to your area, and also drives,? so sorry I don't drive. x
 

SJC

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What area do you live in? just wondering if anyone on the forum would live close enough to your area, and also drives,? so sorry I don't drive. x
It's a nice thought, but I think I will have a word with my eldest daughter and husband this evening and see what they say about a letter from one of them. Thanks so much :) x
 
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It's a nice thought, but I think I will have a word with my eldest daughter and husband this evening and see what they say about a letter from one of them. Thanks so much :) x

That sounds like a positive step forward, good luck and try not to worry too much x
 
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:)[/QUOTE]


'Knowledge is power..........never switch off ':) x
 

Brunneria

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I have very little evidence on which to base this speculation, but these episodes of shaking, weak kneed breathlessness... Any chance they could be hypos?

I am sure there are many different symptoms for low bp, but with me, it is all about the head - feeling dizzy/faint eyesight going spangly, needing to sit down.

My hypos do weak knees and shaking and a sense of empty hollowness.

Do you have a BG meter?
 

SJC

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Hi.
My FBS is usually 4. Something. A reading was taken during my last bad spell and it was 4.2. :)

Sent from the Diabetes Forum App
 

Brunneria

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Hmmm. That isn't really very conclusive. Rapid drops in BG are what trigger hypo symptoms. So you can have the hypo wobbly ness if your BG was high and then dropped suddenly, even if it doesn't go down very low.

Any idea what you had eaten, and how high your BG had been prior to the episode?

Please remember this is just a speculative query!

By the way, I'm v impressed by your fasting BG. It's WAY lower than mine. What makes then think you are prediabetic?
 

SJC

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My average post evening meal Bg over ten days is 5.5. I rarely have anything to eat after 8pm and hadnt had any supper the night before the two collapses in last ten days. My average fbs is 4.5 over last ten days.

If it was my morning bg levels, surely I would be collapsing every morning.
For a bit of fun I did an experiment with my husband last night. We had lasagne, difference being that I had aubergine replacing the pasta. My post meal bg was 5.3 and my husband's was 6.4. My biggest bg reading over 10 days was a one off 7.0 after an Atkins bar.

I was told I had a high end of normal H1C result, aka borderline and therefore prediabetic. I was also reassured that a H1C test can't be wrong!!

Sent from the Diabetes Forum App
 
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