On a plus note, I phoned the pharmacy and they stock the right brand of medicine I need so the hassle has been lessened :).
Whine whine whine. At least I've caught up on postings, hooray!
Tuesday 17 February 2015
Compression Help
Today is blurgh day. When I try to stand up I feel weak, dizzy and shakey. My left leg is really hurting in pulses from hip to foot. I thought it would be good to try the compression stockings as they have made a difference in the past. All that's happened so far is that the pain in the leg has increased, mobility has increased a fraction but the tightness somewhere at the back of my mouth/throat has increased and my voice is starting to get strangled, so it might be on its way out again. I think maybe the compression stockings have worsened stuff this time :(. I'll update the post should the removal make a difference.
London Lupus Visit
Prior to all of this (the post below) happening there was the aforementioned facial rash and a general increase of attacks, joint pain, fatigue, insomnia, low mood etc etc. So with all this in mind I wrote to my specialist who then had his secretary call me back to say my appointment was next week. I hadn't realised this so I felt like a bit of a pleb but I did have three letters from the clinic with different dates on them all marked as 'sent' on the same day. I couldn't get through to them on the phone so just assumed my appointment wasn't until March.
Anyway, what I hadn't noticed was that the clinic had moved location to a totally different hospital and that I had to go to London Bridge now. Unfortunately there is major works all over that station and the normal trains aren't stopping there. The website said that I could go from my local down station and get the Canon Street train so I planned it that way and all seemed fine.
The London trips are always traumatic, painful and tiring. In other words, scary! Due to my insomnia at that point I just gave up on getting any sleep that night and started the journey. When I got to the station the ticket officer told me there were no trains to Canon Street and I had to get off at this station I'd never even heard of. I checked with another guard and he said change at Lewisham and the announcement said change at Dartford. So I had no idea where to change. The lady in front of me on the train was going to a hospital so I had an idea to follow her.. unfortunately they weren't going to the same hospital - and- got off at Dartford. Argh. When we got to Hither Green I just thought screw it, I'll get off here as time was really running out to get there on time. Thank goodness I did. The next train was a Canon St one and I got there just in time. Journey stress! It didn't help that it was freezing cold and drizzly. I only had to wait about an hour to see my specialist and he was lovely. I got to see him with no students this time which was a lot more comfortable. He was kind as always and gave me a few hugs. We talked over the rash, hair loss and some other matters including the -really- low mood. He said that if I wanted to try anti-depressants or sleeping tablets he would help me but it has to be my choice. He's also given me new medication that people with SLE/APS take - Planquenil (Hydroxychloroquine). Apparently it takes 8-12 weeks to start working so fingers crossed. I really, really hope that it helps with the day to day stuff, maybe even the 'bigger' stuff. He noted down the attack from Christmas day and the hemiplegic migraine but when he wrote the letter he completely missed any mention of the attack on Christmas day.. Ah well, I can't complain. The rest of the letter was good.
By the time I'd gone to the pharmacy and got my lunch I was shattered and the journey home was horrible, damp and cold. I managed it and that's what counts. Obviously that much exertion resulted in an attack the following day it seems (second half of post below).
That's done for another 6 months and at least the next trip will be during the summer when it will be warm.. hopefully!
Anyway, what I hadn't noticed was that the clinic had moved location to a totally different hospital and that I had to go to London Bridge now. Unfortunately there is major works all over that station and the normal trains aren't stopping there. The website said that I could go from my local down station and get the Canon Street train so I planned it that way and all seemed fine.
The London trips are always traumatic, painful and tiring. In other words, scary! Due to my insomnia at that point I just gave up on getting any sleep that night and started the journey. When I got to the station the ticket officer told me there were no trains to Canon Street and I had to get off at this station I'd never even heard of. I checked with another guard and he said change at Lewisham and the announcement said change at Dartford. So I had no idea where to change. The lady in front of me on the train was going to a hospital so I had an idea to follow her.. unfortunately they weren't going to the same hospital - and- got off at Dartford. Argh. When we got to Hither Green I just thought screw it, I'll get off here as time was really running out to get there on time. Thank goodness I did. The next train was a Canon St one and I got there just in time. Journey stress! It didn't help that it was freezing cold and drizzly. I only had to wait about an hour to see my specialist and he was lovely. I got to see him with no students this time which was a lot more comfortable. He was kind as always and gave me a few hugs. We talked over the rash, hair loss and some other matters including the -really- low mood. He said that if I wanted to try anti-depressants or sleeping tablets he would help me but it has to be my choice. He's also given me new medication that people with SLE/APS take - Planquenil (Hydroxychloroquine). Apparently it takes 8-12 weeks to start working so fingers crossed. I really, really hope that it helps with the day to day stuff, maybe even the 'bigger' stuff. He noted down the attack from Christmas day and the hemiplegic migraine but when he wrote the letter he completely missed any mention of the attack on Christmas day.. Ah well, I can't complain. The rest of the letter was good.
By the time I'd gone to the pharmacy and got my lunch I was shattered and the journey home was horrible, damp and cold. I managed it and that's what counts. Obviously that much exertion resulted in an attack the following day it seems (second half of post below).
That's done for another 6 months and at least the next trip will be during the summer when it will be warm.. hopefully!
It all looks 'normal' until..
So where to start?
Without my parents I'd be quite literally fucked.
I'm just so pissed off, why? Because I can't even make it downstairs right now. I'm nearly 30, no house, no job, no partner. And I have these stupid fucking illnesses that NOTHING seems to explain and nothing seems to fix. In my current state my parents are doing everything for me and I can only just about make it to the bathroom by myself. In a few days I could be back to 'normal' or as normal as it gets for me.
Just before I left to go and get food on Saturday night I had some very strange tingly chest pains. On my way back they started to get worse, however a car nearly plowing into me on my side of the road caused a big adrenaline boost and I got back in one piece. Though the door with piles of food bags in my arm, I came across my step mum in the kitchen and told her to take the food quickly as I was going down. I knew just a split second before.. I'm not sure how but I knew it was about to collapse. It wasn't like it has been before with the other significant symptoms. This one was just *plonk* and I was down. I grappled at the kitchen counters for a bit to slow my fall but I couldn't hold on for long as I'm not the strongest of people. No one here can lift me so it was just a case of gradually pulling myself up onto a chair with people helping and then trying to use the crutches. However this time the led legs were too much and the wheely desk chair was called upon.
Ended up in a chair in the living room with my now luke-warm McDonalds (how I wish I had some right now!) which was tricky to eat as only half my mouth, one hand, and one eye was working. The mouth was drooped over, the eye lid had closed over and the rest of me was like a dead weight. A friend text to ask how my evening was doing so I thought fuck it, I'll be all modern and send a selfie. Maaay have freaked him out a little. I was in total attack mode for something like 2 hours, wearing off during the third.
So then it was time to tackle the stairs. I have -never- had such a problem with them but it was bloody difficult and took god knows how long. By the end of it I was shattered and the pain in my spine and left hip was something..special.
Is this due to the Cerazette in the same way that the Depo injection reacted? Some kind of migraine? Functional Neurological Disorder? APS/mini-stroke? Vascular spasm/Raynauds or something else? Who the eff knows! Going to hospital each time I have an attack is just pointless - standard MRI of the brain then 'oh its functional, get out'. That's not really going to solve anything.
So now I'm upstairs and not really able to get down. In my head I'm sure that I could make it down but the trip up again wouldn't be wise. Dad and my step mum are bringing up food and I just sit here in my PC chair all day really until its bedtime. If I try to walk my left leg/hip kinda gives out from under me and both legs feel as though they have led tied to them, so as I just stagger and nearly drop (plenty of ledges to cling on to. When I use the crutches the left leg tends to just drag behind in a silly manner.
I have this horrible pain right up my spine, and in my hip and weird travelling 'vein cramp pains' - I have no idea if that's what they are but it's the best way to describe it. What's more odd are the chest pains. They are fairly constant and like an electric stabbing.
Things might be ok tomorrow, or they might still be like this. As if I wasn't miserable before, now its just.. urgh. Tedious and frustrating.
A while into the Depo injection this happened, and now similar with the Cerazette (endo prevention option). I don't know whether or not to stop the tablets. They might be the cause somehow OR they may have nothing to do with it. I don't want to go onto Zoladex :(.
Another attack occured when I was away from home and it was mortifying. I was at my sisters house, laying on my side on my neices bed playing Hello Kitty with her (she's 4). My nephew (11) was sitting just across the room. I suddenly felt like.. I was viewing myself from inside my eyes, totally zoned out, but not, if that makes sense. I couldn't really understand what was going on and as I saw my neice talking at me I couldn't form a reply. I realised I coudn't speak or make the mouth muscles work, and that the rest of my body wasn't responding either. My sister ushered the kids out of the room and dragged me further up the bed into a more comfy position. My face then dropped on the one side and I tried to talk to her but at that point all that came out was a slurred mess, which I guess is better than nothing. It was horrible, I never ever wanted that to happen in front of the kids and it really saddens me that it did. Later on my brother in law came up and carried me downstairs and plonked me on the sofa. Sister had told the kiddies that I had a toothache and was fine. My gorgeous little niece was so sweet and gave me stickers for being poorly. The spaghetti was lovely but kind tricky to eat when only half your mouth is working. Over time the symptoms improved. It came with no warning though this time, however I had been to London on no sleep the previous day and was absolutely shattered so it was inevitable. Seems that this time it was only a mild attack though. The next day they drove me home and I went back later the following week to stay and then drive my car back.
I think the hardest thing about all this is that I don't properly understand what the hell is going on so how can I accept it? I can't see how this is going to get better or how I'll be able to get my independence back that I had when I was 23. I can't work out what to do with myself. I keep reminding myself there is hope but it's kinda starting to fade. Then I think of all these people who would think me pathetic for whining about this. Yes I know I could have cancer or something terminal but.. Things have been shitty since I was 14 years old, I'm tired of this shite, the pain and the immobility! Someone jokingly said 'oh yea, benefit fraud soph' and.. I know they were joking but it still kinda hurt. They have absolutely no conception of what it's been like or how my the illness is. Yep, I know I look 'fine' some of the time.. and many times I look like the picture above. I don't go out or visit people when I'm busted so obviously they only see the 'normal' face. I can't help but be paranoid with how people judge me as I'm in the situation I described above and it makes you very insecure.
That's enough for now, will make an update on the lupus clinic visit a little later.
Without my parents I'd be quite literally fucked.
I'm just so pissed off, why? Because I can't even make it downstairs right now. I'm nearly 30, no house, no job, no partner. And I have these stupid fucking illnesses that NOTHING seems to explain and nothing seems to fix. In my current state my parents are doing everything for me and I can only just about make it to the bathroom by myself. In a few days I could be back to 'normal' or as normal as it gets for me.
Just before I left to go and get food on Saturday night I had some very strange tingly chest pains. On my way back they started to get worse, however a car nearly plowing into me on my side of the road caused a big adrenaline boost and I got back in one piece. Though the door with piles of food bags in my arm, I came across my step mum in the kitchen and told her to take the food quickly as I was going down. I knew just a split second before.. I'm not sure how but I knew it was about to collapse. It wasn't like it has been before with the other significant symptoms. This one was just *plonk* and I was down. I grappled at the kitchen counters for a bit to slow my fall but I couldn't hold on for long as I'm not the strongest of people. No one here can lift me so it was just a case of gradually pulling myself up onto a chair with people helping and then trying to use the crutches. However this time the led legs were too much and the wheely desk chair was called upon.
Ended up in a chair in the living room with my now luke-warm McDonalds (how I wish I had some right now!) which was tricky to eat as only half my mouth, one hand, and one eye was working. The mouth was drooped over, the eye lid had closed over and the rest of me was like a dead weight. A friend text to ask how my evening was doing so I thought fuck it, I'll be all modern and send a selfie. Maaay have freaked him out a little. I was in total attack mode for something like 2 hours, wearing off during the third.
 |
| 'Normal' face and 'attack' face. Lovely! Don't judge illness just by a profile picture! |
So then it was time to tackle the stairs. I have -never- had such a problem with them but it was bloody difficult and took god knows how long. By the end of it I was shattered and the pain in my spine and left hip was something..special.
Is this due to the Cerazette in the same way that the Depo injection reacted? Some kind of migraine? Functional Neurological Disorder? APS/mini-stroke? Vascular spasm/Raynauds or something else? Who the eff knows! Going to hospital each time I have an attack is just pointless - standard MRI of the brain then 'oh its functional, get out'. That's not really going to solve anything.
So now I'm upstairs and not really able to get down. In my head I'm sure that I could make it down but the trip up again wouldn't be wise. Dad and my step mum are bringing up food and I just sit here in my PC chair all day really until its bedtime. If I try to walk my left leg/hip kinda gives out from under me and both legs feel as though they have led tied to them, so as I just stagger and nearly drop (plenty of ledges to cling on to. When I use the crutches the left leg tends to just drag behind in a silly manner.
I have this horrible pain right up my spine, and in my hip and weird travelling 'vein cramp pains' - I have no idea if that's what they are but it's the best way to describe it. What's more odd are the chest pains. They are fairly constant and like an electric stabbing.
Things might be ok tomorrow, or they might still be like this. As if I wasn't miserable before, now its just.. urgh. Tedious and frustrating.
A while into the Depo injection this happened, and now similar with the Cerazette (endo prevention option). I don't know whether or not to stop the tablets. They might be the cause somehow OR they may have nothing to do with it. I don't want to go onto Zoladex :(.
Another attack
Another attack occured when I was away from home and it was mortifying. I was at my sisters house, laying on my side on my neices bed playing Hello Kitty with her (she's 4). My nephew (11) was sitting just across the room. I suddenly felt like.. I was viewing myself from inside my eyes, totally zoned out, but not, if that makes sense. I couldn't really understand what was going on and as I saw my neice talking at me I couldn't form a reply. I realised I coudn't speak or make the mouth muscles work, and that the rest of my body wasn't responding either. My sister ushered the kids out of the room and dragged me further up the bed into a more comfy position. My face then dropped on the one side and I tried to talk to her but at that point all that came out was a slurred mess, which I guess is better than nothing. It was horrible, I never ever wanted that to happen in front of the kids and it really saddens me that it did. Later on my brother in law came up and carried me downstairs and plonked me on the sofa. Sister had told the kiddies that I had a toothache and was fine. My gorgeous little niece was so sweet and gave me stickers for being poorly. The spaghetti was lovely but kind tricky to eat when only half your mouth is working. Over time the symptoms improved. It came with no warning though this time, however I had been to London on no sleep the previous day and was absolutely shattered so it was inevitable. Seems that this time it was only a mild attack though. The next day they drove me home and I went back later the following week to stay and then drive my car back.
I think the hardest thing about all this is that I don't properly understand what the hell is going on so how can I accept it? I can't see how this is going to get better or how I'll be able to get my independence back that I had when I was 23. I can't work out what to do with myself. I keep reminding myself there is hope but it's kinda starting to fade. Then I think of all these people who would think me pathetic for whining about this. Yes I know I could have cancer or something terminal but.. Things have been shitty since I was 14 years old, I'm tired of this shite, the pain and the immobility! Someone jokingly said 'oh yea, benefit fraud soph' and.. I know they were joking but it still kinda hurt. They have absolutely no conception of what it's been like or how my the illness is. Yep, I know I look 'fine' some of the time.. and many times I look like the picture above. I don't go out or visit people when I'm busted so obviously they only see the 'normal' face. I can't help but be paranoid with how people judge me as I'm in the situation I described above and it makes you very insecure.
That's enough for now, will make an update on the lupus clinic visit a little later.
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