Wednesday 21 March 2012
Letter writing..
Wrote the ESA and DLA letters today to make sure they are up to date with what is going on. It makes me more sad and frustrated going over everything again. So much has happened, it's so hard to put it down accurately into writing and try and make another person understand without thinking you're an absolute looney!
Monday 19 March 2012
Lost count..
I've not been updating this as much as I should have. I guess it's because recently the episodes have been more mild.
Up until now the constant elements have been:
>Goose pimples/pins and needles down left side of body and legs.
>Very fast heart beat, yesterday and today it's been up at 130bpm.
>Discolouration in hands and feet; red/white.
>Feeling of lump in throat/loss of voice.
>Very very cold.
>Sudden weight gain.
>Frequent loss of coordination when typing and slow thinking/speaking.
>Loss of mobility in left foot
>Pain in left toe every day, Intermittent pain in specific parts of the leg.
>Nerve feeling/tightness in face/head.
>Face spasm left side, mostly after physical activity.
>Bubbling/burp or tickling in left side chest.
>When laying to sleep get a jolt in chest, pain in left side chest and a horrible cold feeling spreads all over body.
>Constant pulsing in stomach.
>Erratic circulation to feet and hands; red sploges, swelling.
Today (I think 15th attack)
Tonight I had a collapsing episode again at 6:30pm. I think I knew it was coming. I've been up since 8:00am and been feeling strange all day. We took the car for its MOT and driving it was not pleasant. I still cannot feel or move my left foot properly, which makes clutch control difficult, but it's over with now. Trying to bend the toes makes them flinch or shake. Throughout the day I've noticed that I've had trouble thinking and my coordination when typing has been poor since last night. When I typed I thought I was using the correct letters but only a jumble was coming out. It's so frustrating! All through the day I've had pins and needles down the left side and
At about 5:30pm I felt a little giddy and knew something wasn't quite right. Went inside, we ate dinner and I stood up to talk to my dad about something on his phone. As I was standing there I began finding it harder to listen and felt myself zoning out. Then swayed and felt myself go. Grabbed onto my dad this time to prevent falling and stayed there. My legs started to shake violently and they felt so so heavy, like they weren't my own. My parents then helped my into the living room. Trying to move my legs was like trying to walk with led boots on. It's now 5 hours later and its a little better. I've shot a video of me trying to walk at the moment, maybe it won't show very well but we'll see. I just can't... feel them properly. It seems to be the case that if I try to do any 'normal' physical activity (I washed the car yesterday) the attacks come soon after.
Over the last few hours I've been sitting quietly and was watching a movie. As soon as my parents got me into the living room my face started the pull to the side and composing a sentence in my head and speaking it was very very difficult. When I try to speak I sound like someone with special needs. I don't really understand how I'm meant to deal with this. If my dad hadn't have been there I'd have been on the floor again, unable to move myself for some time. It's scary. Is it normal for a 26 year old to collapse three or four times at home in one the space of 2 months and have no treatment? I feel like 'because I am young' it's not of much concern. I don't know what I'm meant to do and it's scary.
A friend called me near the end of the film I was watching. At first it was hard to speak with him as it was hard for me to think and construct sentences. For a short while it was then pretty normal and about 5 minutes later, my face and tongue had been pulled to the side and I could barely speak through the slurring so we had to hang up. The pins and needles keep washing down one side of my body every few minutes.. or are they goose pimples, I don't know. Finding words for everything is hard. My heart has been thumping and tonight it's been 'tickling' and gurgling in the left side of my chest.. I assume that means palpitations? My face was boiling hot, I feel so much pressure in my head and my tinnitus is going so so loud. The rest of my body is absolutely freezing. I've been wearing a winter coat all day.
Sleeping is very hard, most nights I have to sit up and just wait until I fall asleep. If I lay down I often get pain in my chest on the left side. As I drift off I get a jolt in my chest and a horrible feeling spreads right down my body. That happens 1-4 times a night. I wake up sometimes in the night and can't feel my limbs properly.
The 'lump in throat' feeling still comes up and down 3 to 4 times a day and when it's up I can't talk at all (unless I put my chin to my right shoulder) which makes things, difficult. It's like I have some sort of balloon in my neck.
Anyway I'm going to add some images in here before I forget.
That's all for now I think.. Far too tired!
*Edit*
Also found this, it's from 20th February but I dont think I posted it in here:
"Another scary night! Earlier today my sister had come to visit and we braved having a wander around Bluewater. At the time it was slightly tiring and my chest was feeling 'funny' or 'tight' for most of the trip, I'd not been out, aside from hospital visits, in such a long time and had missed seeing my sister so much. I think there has only been one other trip out to eat since the first attack. It all began at about 5:30pm. I'd been telling my sister about the way I take pictures and we were sat in my room quietly editing a few shots from our phones. I'd suddenly got some stomach cramps, went to the toilet and on coming back into the room I felt something was wrong. It was as if someone had turned my thougts off, it was so quiet, I could hear my sister talking but I couldn't really formulate any type of response. Waves of nausea became apparent and so I grabbed the bin.. just to be safe. I started to get the familiar small pulsing pain in the one spot on the side of my head. For some reason a couple of tears came from my eyes, but I was not crying! The nerves in my face seemed to start pulling and the bubbling in my chest started along with the 'feeling' of movement through my neck and up into my head. The numbness/loss of sensitivity in my cheeks has seemingly spread to all over my face, except for around my eyes and nose. Breathing was once again feeling...wrong. The closest thing I can describe this as is if you are trying to drink a fizzy drink through a straw with a hole in it. I opened my mouth to speak to my sister but the words just wouldn't come out. My face wasn't drooped, yet, but all my words were slow and slurred. Got up and the legs, once again, had seemingly decided to not really co-operate, however, we shifted base to downstairs so that I was in the room with my parents.
It's horrible to sit there and put your family through this, it really is. It's only afterwards the guilt hits though. It makes me sad that I can't fix things, I can't control it and no one has seemed all that bothered that this is happening to someone in their mid twenties, except the most recent doctor.
Anyway, that's going off on a bit of a tangent. The symptoms worsened a little more with my whole left side turning into dead weight and I sort of slumped to the left in the chair and just turned into a zombie for a while, unable to form sentances or move. After a few hours it seemed to be over and I was glad this episode had not been worse. If anything, it was closer to resembling the initial attack than all the others but I managed to get back on my feet and wobble about, trying to walk.
Later this evening my heart began to thump really really fast after I'd come back up to my bedroom. It was alright until the breathing once again felt.. wrong. It's so hard to describe all these feelings inside.. all are strange and I feel its so important to convey the feeling with the correct word but in my case, I seem to fail at it rather well! Back downstairs to check my blood pressure - 129/76 120bpm (x3). No idea what the first numbers mean but all that fast thumping while sitting down didn't feel right at all. Again, the nausea came and then more nerve twitches, intermittent loss of voice and an intense dizziness. This is when it got..worrying. I literally had no control over what was happening inside me. Breathing was causing horrible feelings in my chest and what I assume to be my heart. I suppose there is less of a mental panic now though, it has happened so many times now that I hope it will not cause the worst to happen. Eventually the facial droop came which was a welcome relief as it seems to signify the tail end of an episode. I can only keep my fingers crossed and hope that two episodes today will mean none tomorrow!"
Up until now the constant elements have been:
>Goose pimples/pins and needles down left side of body and legs.
>Very fast heart beat, yesterday and today it's been up at 130bpm.
>Discolouration in hands and feet; red/white.
>Feeling of lump in throat/loss of voice.
>Very very cold.
>Sudden weight gain.
>Frequent loss of coordination when typing and slow thinking/speaking.
>Loss of mobility in left foot
>Pain in left toe every day, Intermittent pain in specific parts of the leg.
>Nerve feeling/tightness in face/head.
>Face spasm left side, mostly after physical activity.
>Bubbling/burp or tickling in left side chest.
>When laying to sleep get a jolt in chest, pain in left side chest and a horrible cold feeling spreads all over body.
>Constant pulsing in stomach.
>Erratic circulation to feet and hands; red sploges, swelling.
Today (I think 15th attack)
Tonight I had a collapsing episode again at 6:30pm. I think I knew it was coming. I've been up since 8:00am and been feeling strange all day. We took the car for its MOT and driving it was not pleasant. I still cannot feel or move my left foot properly, which makes clutch control difficult, but it's over with now. Trying to bend the toes makes them flinch or shake. Throughout the day I've noticed that I've had trouble thinking and my coordination when typing has been poor since last night. When I typed I thought I was using the correct letters but only a jumble was coming out. It's so frustrating! All through the day I've had pins and needles down the left side and
At about 5:30pm I felt a little giddy and knew something wasn't quite right. Went inside, we ate dinner and I stood up to talk to my dad about something on his phone. As I was standing there I began finding it harder to listen and felt myself zoning out. Then swayed and felt myself go. Grabbed onto my dad this time to prevent falling and stayed there. My legs started to shake violently and they felt so so heavy, like they weren't my own. My parents then helped my into the living room. Trying to move my legs was like trying to walk with led boots on. It's now 5 hours later and its a little better. I've shot a video of me trying to walk at the moment, maybe it won't show very well but we'll see. I just can't... feel them properly. It seems to be the case that if I try to do any 'normal' physical activity (I washed the car yesterday) the attacks come soon after.
Over the last few hours I've been sitting quietly and was watching a movie. As soon as my parents got me into the living room my face started the pull to the side and composing a sentence in my head and speaking it was very very difficult. When I try to speak I sound like someone with special needs. I don't really understand how I'm meant to deal with this. If my dad hadn't have been there I'd have been on the floor again, unable to move myself for some time. It's scary. Is it normal for a 26 year old to collapse three or four times at home in one the space of 2 months and have no treatment? I feel like 'because I am young' it's not of much concern. I don't know what I'm meant to do and it's scary.
A friend called me near the end of the film I was watching. At first it was hard to speak with him as it was hard for me to think and construct sentences. For a short while it was then pretty normal and about 5 minutes later, my face and tongue had been pulled to the side and I could barely speak through the slurring so we had to hang up. The pins and needles keep washing down one side of my body every few minutes.. or are they goose pimples, I don't know. Finding words for everything is hard. My heart has been thumping and tonight it's been 'tickling' and gurgling in the left side of my chest.. I assume that means palpitations? My face was boiling hot, I feel so much pressure in my head and my tinnitus is going so so loud. The rest of my body is absolutely freezing. I've been wearing a winter coat all day.
Sleeping is very hard, most nights I have to sit up and just wait until I fall asleep. If I lay down I often get pain in my chest on the left side. As I drift off I get a jolt in my chest and a horrible feeling spreads right down my body. That happens 1-4 times a night. I wake up sometimes in the night and can't feel my limbs properly.
The 'lump in throat' feeling still comes up and down 3 to 4 times a day and when it's up I can't talk at all (unless I put my chin to my right shoulder) which makes things, difficult. It's like I have some sort of balloon in my neck.
Anyway I'm going to add some images in here before I forget.
 |
| 5th Mar 2012: Right hand cold, left hand swollen and hot. |
 |
| 7th Mar 2012: Left hand feels swollen and warm, right hand cold. |
 |
| Sharp pains in leg, slight swelling of kneecap area on standing - 24th Feb 2012 |
 |
| Colour comparison - 3rd Mar 2012. |
 |
| Red and white patches - 10th Mar 2012. |
 |
| Mysterious purple travelling patch. Foot, knee and hand - 11th Mar 2012. |
 |
| Random head pressure/hot flushes in head - 8th Feb 2012. |
 | ||
| One of the 'worse' attacks (home). Face spasm. Loss of mobility face/body - 11th Feb 2012. |
 |
| Red patch in foot - 19th March 2012. |
 |
| Colour of foot in the bath, comparison to 'warm' hand - 13th Feb 2012. |
 | |||
| Hand discolouration (filtered) - 2nd Mar 2012. |
That's all for now I think.. Far too tired!
*Edit*
Also found this, it's from 20th February but I dont think I posted it in here:
"Another scary night! Earlier today my sister had come to visit and we braved having a wander around Bluewater. At the time it was slightly tiring and my chest was feeling 'funny' or 'tight' for most of the trip, I'd not been out, aside from hospital visits, in such a long time and had missed seeing my sister so much. I think there has only been one other trip out to eat since the first attack. It all began at about 5:30pm. I'd been telling my sister about the way I take pictures and we were sat in my room quietly editing a few shots from our phones. I'd suddenly got some stomach cramps, went to the toilet and on coming back into the room I felt something was wrong. It was as if someone had turned my thougts off, it was so quiet, I could hear my sister talking but I couldn't really formulate any type of response. Waves of nausea became apparent and so I grabbed the bin.. just to be safe. I started to get the familiar small pulsing pain in the one spot on the side of my head. For some reason a couple of tears came from my eyes, but I was not crying! The nerves in my face seemed to start pulling and the bubbling in my chest started along with the 'feeling' of movement through my neck and up into my head. The numbness/loss of sensitivity in my cheeks has seemingly spread to all over my face, except for around my eyes and nose. Breathing was once again feeling...wrong. The closest thing I can describe this as is if you are trying to drink a fizzy drink through a straw with a hole in it. I opened my mouth to speak to my sister but the words just wouldn't come out. My face wasn't drooped, yet, but all my words were slow and slurred. Got up and the legs, once again, had seemingly decided to not really co-operate, however, we shifted base to downstairs so that I was in the room with my parents.
It's horrible to sit there and put your family through this, it really is. It's only afterwards the guilt hits though. It makes me sad that I can't fix things, I can't control it and no one has seemed all that bothered that this is happening to someone in their mid twenties, except the most recent doctor.
Anyway, that's going off on a bit of a tangent. The symptoms worsened a little more with my whole left side turning into dead weight and I sort of slumped to the left in the chair and just turned into a zombie for a while, unable to form sentances or move. After a few hours it seemed to be over and I was glad this episode had not been worse. If anything, it was closer to resembling the initial attack than all the others but I managed to get back on my feet and wobble about, trying to walk.
Later this evening my heart began to thump really really fast after I'd come back up to my bedroom. It was alright until the breathing once again felt.. wrong. It's so hard to describe all these feelings inside.. all are strange and I feel its so important to convey the feeling with the correct word but in my case, I seem to fail at it rather well! Back downstairs to check my blood pressure - 129/76 120bpm (x3). No idea what the first numbers mean but all that fast thumping while sitting down didn't feel right at all. Again, the nausea came and then more nerve twitches, intermittent loss of voice and an intense dizziness. This is when it got..worrying. I literally had no control over what was happening inside me. Breathing was causing horrible feelings in my chest and what I assume to be my heart. I suppose there is less of a mental panic now though, it has happened so many times now that I hope it will not cause the worst to happen. Eventually the facial droop came which was a welcome relief as it seems to signify the tail end of an episode. I can only keep my fingers crossed and hope that two episodes today will mean none tomorrow!"
Thursday 15 March 2012
Auto-immune..
I've literally just come across this: http://autoimmunelife.wordpress.com/
I need to do lots of reading tonight! Could there possibly be light at the end of the tunnel? I had no idea Endometriosis had anything to do with auto-immune!
Also, I should make note of this for later: http://www.endofound.org
Perhaps I'm clutching at straws but it's worth looking at..
I need to do lots of reading tonight! Could there possibly be light at the end of the tunnel? I had no idea Endometriosis had anything to do with auto-immune!
Also, I should make note of this for later: http://www.endofound.org
Perhaps I'm clutching at straws but it's worth looking at..
Wednesday 14 March 2012
Another long night..
Once again my chest has decided it's a bad idea for me to lay down. Everything seems to go all heavy, then there is a rush of a horrible feeling all over my body and pain in the left side of my chest, just under the rib cage. At one point I was pretty sure my head was inflating as this pressure seemed to fill me. Seems like I'm just going to have to stay up until I can fall asleep sitting up.
I tried some really gentle yoga stretches today. Even though they were simple my body was shaking for a fair while afterwards. It was going okay until the left leg came into it. It seems to only be able to do minor things for a short while and then becomes a bit of a dead weight. Had it flop over to the opposite side (during a stretch lifting the leg with a dressing gown belt) and it just went down further and further and I couldn't pull it up. Felt the muscles protest and try to cramp but I got it back eventually. I'll attempt some more tomorrow and see if there is any improvement.
Zzzz so tired..
Saw Mr D (ENT) yesterday evening at the hospital. He said that had it only voice that was the issue then he would have tried harder but as it could be something overall that was causing a knock on effect to the neck then he trusts in the current neurologist to find out what is causing this. I understand his position so there really isn't much I can do about it. I'm still not really sure how something can show up on one scan and then not on the next. I guess I just have to hope and wait. He did try to explain about the measurments being made in a different way and emphasised that the MWH doctor was a specialist in carotid scanning and not for lumps in the throat. These doctors are so strange, depending on thier mood they seem to discount one medical opinion if it doesn't suit what they assume and blindly follow the advice of another radiologist who happens to be their favourite. Part of me wonders if there is a bit of a 'silly boys club' going on where they don't know what it is so they reccommend their mates so they can get a share in the 'we don't know' medical insurance consultation payments.
I am shocked that last night the doctor would have been paid a substantial amount of money to sit there for 5 minutes and tell me that "I have no answers for you". This isn't to say that the man was mean or a horrible doctor, he wasn't. I understand that this is not straight forward. Still, no wonder they drive such posh cars when they get paid for solving.... nothing.
I tried some really gentle yoga stretches today. Even though they were simple my body was shaking for a fair while afterwards. It was going okay until the left leg came into it. It seems to only be able to do minor things for a short while and then becomes a bit of a dead weight. Had it flop over to the opposite side (during a stretch lifting the leg with a dressing gown belt) and it just went down further and further and I couldn't pull it up. Felt the muscles protest and try to cramp but I got it back eventually. I'll attempt some more tomorrow and see if there is any improvement.
Zzzz so tired..
Saw Mr D (ENT) yesterday evening at the hospital. He said that had it only voice that was the issue then he would have tried harder but as it could be something overall that was causing a knock on effect to the neck then he trusts in the current neurologist to find out what is causing this. I understand his position so there really isn't much I can do about it. I'm still not really sure how something can show up on one scan and then not on the next. I guess I just have to hope and wait. He did try to explain about the measurments being made in a different way and emphasised that the MWH doctor was a specialist in carotid scanning and not for lumps in the throat. These doctors are so strange, depending on thier mood they seem to discount one medical opinion if it doesn't suit what they assume and blindly follow the advice of another radiologist who happens to be their favourite. Part of me wonders if there is a bit of a 'silly boys club' going on where they don't know what it is so they reccommend their mates so they can get a share in the 'we don't know' medical insurance consultation payments.
I am shocked that last night the doctor would have been paid a substantial amount of money to sit there for 5 minutes and tell me that "I have no answers for you". This isn't to say that the man was mean or a horrible doctor, he wasn't. I understand that this is not straight forward. Still, no wonder they drive such posh cars when they get paid for solving.... nothing.
Sunday 11 March 2012
Sad
Probably stupid of me but earlier I wrote a teenie post on FB about being tired of being broken all the time. Although the virtual hug comments were all very lovely and much appreciated, it doesn't really make them a real hug. Wish I could have a really big hug.. one where I could hide and all the bad things would go away. Anyway, I wrote a message back to an e-friend and I guess it covers what I'm feeling right now.
Thanks for the mail. Yeah you're right but it's not that I'm pissed off, it's that I'm sad. I hate my life right now, I'm tired of being in pain or ill all the time. I'm tired of being a horrible burden on the people I love, having no independence and everything is a struggle. I'm totally disconnected from my friends and sisters. The whole world keeps turning and I'm stuck still wallowing in self pity even though it's more like sadness and frustration. I'm tired. I feel guilty for moaning about it as there's nothing I can do and.. Oh I don't know. I just want some of my life back. The last few days I've had the other condition i suffer with (for years) come back quite badly. If something was fixable then maybe I would feel happier.. but nothing I have is. I'm just a defect wrapped in a normal looking person. Mostly I can put up with that but the last few days have been harder. I appreciate the hug.. thank you.
It's been a rough few days. Seems like any times I get the funny feelings in my chest my insides turn to water and the cramps come. Tonight wasn't so painful but it was very unpleasant. My heart seemed to.. tickle.. and then I felt quite sick and the cramps started.. then a rush to the loo. How pleasant.
Thanks for the mail. Yeah you're right but it's not that I'm pissed off, it's that I'm sad. I hate my life right now, I'm tired of being in pain or ill all the time. I'm tired of being a horrible burden on the people I love, having no independence and everything is a struggle. I'm totally disconnected from my friends and sisters. The whole world keeps turning and I'm stuck still wallowing in self pity even though it's more like sadness and frustration. I'm tired. I feel guilty for moaning about it as there's nothing I can do and.. Oh I don't know. I just want some of my life back. The last few days I've had the other condition i suffer with (for years) come back quite badly. If something was fixable then maybe I would feel happier.. but nothing I have is. I'm just a defect wrapped in a normal looking person. Mostly I can put up with that but the last few days have been harder. I appreciate the hug.. thank you.
It's been a rough few days. Seems like any times I get the funny feelings in my chest my insides turn to water and the cramps come. Tonight wasn't so painful but it was very unpleasant. My heart seemed to.. tickle.. and then I felt quite sick and the cramps started.. then a rush to the loo. How pleasant.
Saturday 10 March 2012
Update
It feels like I've not writtten in ages. It's not exactly the hardest thing in the world to do but I'm finding that because all this stuff happens, writing about it makes me go through it all again in my head and I get more frustrated about the situation. As I look back at the letters and all the things that have happened including all of the endometreosis stuff and PCOS before that.. I think to myself, am I cursed? Am I just really unlucky or is there something underlying that isn't quite right. I suppose you get to a point of having most of your independance taken from you where you start to question everything. I saw a 19 year old girl post on the FB endo page the other day about how unhappy she was, how her social life was impossible and how much pain she was in. I felt so sad for her and a part of me thought thank god I'm not at that stage of my life again. I loved being in Australia.. so so much, but to go through the last few years again.. I couldn't do it. I guess it's good that she's found out at that age as maybe they can help more. There wasn't much I could say to console her though as really there is only pain control and sometimes even that doesn't make a blind bit of difference.
Anyway, so I can say with slightly more happiness I've not had a 'scary' attack for the last few days. Things are seemingly a bit calmer which gives me hope that whatever caused it in the first place is under control. I had a cardiac at RBH on Thursday. I thought it would be fine but during the scan my chest was hurting a lot and after what felt like a long time I got one of the jolts and breathing felt funny. My pulse felt so fast and strong that I could feel it in my teeth and my whole head felt like it was pulsing. That tends to happen every night when I lay down to go to sleep. I try to pad the pillows up so I am almost sitting and eventually I drift off. The jolts aren't pleasant though and the feeling down half the body afterwards is.. nasty! It's almost as if someone else is controlling my breathing. Circulation is so very strange at the moment too. It's like I don't have enough blood in my body. Had a few cases in the evening that one hand was white and freezing cold and the other was swollen and red. Then random fingers will go red or white and the same with my feet. Random patches of cold.. I've taken photographs but,, well I don't know if they are strange or not but I know it doesn't feel right. The left foot still isn't working but I think it's slightly improved from what it was. I can sort of.. twitch it.. if that makes sense? The lump in the throat keeps coming back in the evenings and my voice randomly dies entirely when it's at its most annoying stage. It's like havina a bubble somewhere in there that pumps up at different stages of the day. One minute I can talk, the next I can't. One ultrasound showed one thing, another showed nothing. This is what's confusing me. If they have done a CT of throat, chest and abdomen, why did they not pick up on this in the first place? Why did the heart ultrasound pick something up when the people say the CT is fine. Now DrC is asking for an MRI of the neck.. All these different scans and some pick up things that others don't.. How am I meant to even begin to trust these scans? It all feels like it did during those horrific 4 years where I had scan after scan and they told me there is definately nothing physical wrong with me as the scans showed nothing. Yet the endometreosis didn't show on the scan and this did not mean it wasn't there. It most definately was. Sitting there gluing things together, screwing up my abdomen. I wish I could believe that what they say is how it is.. but when no one is really actively trying to find out what the hell is happening to me and why. it seems that if I look normal during a consultation, everything is fine.
What also confuses me is why do doctors ask for family history and just ignore it. No one yet has seemed to note that me and my father are having medical problems at the moment and both of our scans have showed nodules in the thyroid. Also, the blood test I tested positive for is a form of autoimmune disease, which my father has recently been diagnosed with (a different variant though).
I want to be better, I want my life back. I just need a bit of help :(
Anyway, so I can say with slightly more happiness I've not had a 'scary' attack for the last few days. Things are seemingly a bit calmer which gives me hope that whatever caused it in the first place is under control. I had a cardiac at RBH on Thursday. I thought it would be fine but during the scan my chest was hurting a lot and after what felt like a long time I got one of the jolts and breathing felt funny. My pulse felt so fast and strong that I could feel it in my teeth and my whole head felt like it was pulsing. That tends to happen every night when I lay down to go to sleep. I try to pad the pillows up so I am almost sitting and eventually I drift off. The jolts aren't pleasant though and the feeling down half the body afterwards is.. nasty! It's almost as if someone else is controlling my breathing. Circulation is so very strange at the moment too. It's like I don't have enough blood in my body. Had a few cases in the evening that one hand was white and freezing cold and the other was swollen and red. Then random fingers will go red or white and the same with my feet. Random patches of cold.. I've taken photographs but,, well I don't know if they are strange or not but I know it doesn't feel right. The left foot still isn't working but I think it's slightly improved from what it was. I can sort of.. twitch it.. if that makes sense? The lump in the throat keeps coming back in the evenings and my voice randomly dies entirely when it's at its most annoying stage. It's like havina a bubble somewhere in there that pumps up at different stages of the day. One minute I can talk, the next I can't. One ultrasound showed one thing, another showed nothing. This is what's confusing me. If they have done a CT of throat, chest and abdomen, why did they not pick up on this in the first place? Why did the heart ultrasound pick something up when the people say the CT is fine. Now DrC is asking for an MRI of the neck.. All these different scans and some pick up things that others don't.. How am I meant to even begin to trust these scans? It all feels like it did during those horrific 4 years where I had scan after scan and they told me there is definately nothing physical wrong with me as the scans showed nothing. Yet the endometreosis didn't show on the scan and this did not mean it wasn't there. It most definately was. Sitting there gluing things together, screwing up my abdomen. I wish I could believe that what they say is how it is.. but when no one is really actively trying to find out what the hell is happening to me and why. it seems that if I look normal during a consultation, everything is fine.
What also confuses me is why do doctors ask for family history and just ignore it. No one yet has seemed to note that me and my father are having medical problems at the moment and both of our scans have showed nodules in the thyroid. Also, the blood test I tested positive for is a form of autoimmune disease, which my father has recently been diagnosed with (a different variant though).
I want to be better, I want my life back. I just need a bit of help :(
Sunday 4 March 2012
Monday.. I guess.
So...very..cold! Mostly in my arm.. no matter what I cover it with it doesn't seem to change. I even have Lamguino taped to it but all it feels like is cold sweat. Have had face pull/droop for about 12 hours now. My right hand swelled up earlier too, particularlly the first finger. I tried to take a photography but not really sure how that will come out! I've tried to go to sleep but a mixture of my chest feeling funny and the cold is keeping me up. Hopefully will just get too tired to stay up soon.
It's making me sad, just lost.. none of it makes sense.
It's making me sad, just lost.. none of it makes sense.
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