I feel.. all yuck. It's as if my whole body is pulsing and it's really scary. My heart is beating so fast.. I don't know what to do. It feels like everything is trembling inside :(. Kinda, out of breath and I'm only sitting at a desk.
Last night I noticed while I was playing online that I was pressing the wrong buttons with my left hand a lot, then it started to feel heavy and trembly. Then it all got too much so I went to lay down. Then the rushing horrible dropping sensation happened.. like missing the step in dreams.. but it didnt go, it just hung there, horrible. I was so scared. I turned on the light and I was so pale and cold. Yuck!
Friday 25 May 2012
Monday 14 May 2012
Malta and other bits..
I made it! Well, mostly. My flight was at 6:30am and because I had to leave the house at about 3am I thought it a better option not to sleep rather than sleep for a couple of hours and then wake up grotty. Usually I am quite 'awake' in the night time although on this occasion I was sleepy by 10am.. great. Drank some sugary things and tried to keep myself awake. The trip to and though Gatwick was alright as long as I sat down for a bit every so often. Then game the plane trip.. oh god it was horrible. I've never felt quite like it on a plane. We'd not even taken off and I started to feel like I was inflating inside. There was all this pressure inside me and my hands and feet started to swell up and get hot. As the plane took off I started to get very scared. It felt like I was going to go pop. The heartbeat in my head was so loud and fast, my chest, arms and feet were hurting and I just didn't know what to do with myself. I closed my eyes and tried to keep as calm as I could. I just remember thinking 'please stop going up, please stop going up'.. There was a moment of panic when I thought I might actually have to get help but then I felt the urge to vomit, the right side of my head went really hot then really cold and I sat as still as I could and grabbed the sick bag. Luckily the flight really isn't that long but it felt longer than it was.. if that makes sense. I remember worrying about how the hell I was going to get home again because there was no way I could take another plane after that journey. Thinking about it now, it's just not possible to go any other way so I have to be brave, grit my teeth and just get it over with. It's doubtful I'm going anywhere near a plane again until this stuff is sorted.
I arrived in Malta exhausted. There was no possible way that I could get any sleep on the plane (as I had previously planned to do). Got the bag and got a taxi to Sliema. Met up with my friends husband at their hotel and then me, him and his daughter walked down to the seafront, which wasn't that far but little tiring as I'm a bit pathetic right now. After lunch we headed back to the hotel to pick up the bags and make for the apartment that they had rented for the week. So, lugging all my stuff with me, we trekked across Sliema in seemingly any direction as they didn't know where the place we were heading was. I tried as hard as I could to keep up but my legs and everything else just felt like it was giving up and I dropped further and further back. Countless streets later we got to the seafront and the tiredness had turned into pain. My feet felt like they were going to burst again and that there were needles stabbing in to various places. My heart was banging, had the feeling of something cold inflating in my neck and then I started feeling the air bubbles. Made it to the curb and that was it, just collapsed in a bit of a heap. This is when my friends realised something wasn't quite right. They turned to help but for a while I couldn't really feel or move my legs. I don't know really if I was thinking at the time.. probably 'oh no'.. I felt more sad though. It's like, if I push myself into doing too much my body just refuses and shuts something down. This time it effected the right side with the arm feeling partially non responsive and the leg was just not working at all. They tried to pull me up but putting any weight on it caused it to shake violently. My friends husband got me to a chair and we sat there for a while. My face then drooped/spasmed on the left and the speech began to slur, like my tongue was just not capable of helping form words. I took my shoes and socks off and my feet were purple and swollen, almost blue in places, it was horrible. Apparently a policeman and some others stopped to call an ambulance but.. well what would that achieve? Only a hefty bill probably. It took about an hour to get back most of the use of the leg but once again I couldn't and still cant bend the toe or move the foot properly. God, it makes me feel so useless. It's like... I try my best to warn people/friends that I have limits and if break them I get very ill. I guess I feel so frustrated and am just screaming inside my own head because people don't understand. They see you look normal from the outside and assume that you have to 'look ill' to 'be ill' but that isn't the case at all. I warn people that things happen if I push too far yet I can't constantly be saying 'oh I can't do this, or that, or the plans have to change' because of me. Especially when you are trying to find the place you are staying and don't know where it is. I don't want to cause people extra hassle. Yet when I try to do things and bad things happen, those people look shocked and ask what the hell is happening and I just want to cry and make them understand.. yet I can't. I hate what people must think of me. Then afterwards I get told not to push myself as it's not worth it. So either I can shut up, not be a pain to people and carry on as 'normal' and be told 'not to overdo it' later, or I can be a massive pain in the bum and have to change all their plans to suit me. It was silly of me to think that I could cope with going so far away at this stage. I don't mean to sound ungrateful at all, I'm very lucky to have the opportunity to come here and spend some time in the warmth. Yet I feel nothing but a burden on the people I am with, I'm in pain most of the time, there's nowhere to hide and rest and it all just makes me feel like rubbish. It's a good experience though, it makes be recognise my boundaries more, be grateful for many things and hopefully help me work out things that I can do instead to at least help myself find a happier situation.
The rest of the stay hasn't been as dramatic as the first day but the tiredness is playing a large role in that, most nights I'm in bed before 9pm. The wake up pain isn't pleasant though. The pleurisy pain is kinda spreading right down my back now too. I came back earlier from Valletta today as I just couldn't cope with walking for miles and miles.. and miles. I'd love to be able to like my friends can, but I just cant. I felt my feet swelling, chest hurting and started getting dizzy so I decided not to push it again.. we were too far from the apartment! So I had a nice burger for lunch and then came back on my own. I hate to say it but I feel a little better on my own as I don't feel so guilty for letting people down or making them change their plans.
On a random other note, something I'm noticing is that I'm not healing, erm, very fast at the moment. I've had a thing on my arm since before V's wedding and it's not really gone down much. There are also two cuts on my fingers that, when my hand goes red and swollen, they have white marks round them. I guess I'm just worrying about everything right now, mainly because my whole life seems to be focused around illness. Oh, voice has been going completely for a few hours each day too. Usually later in the evening.
I went to the GP before coming out here and he suggested taking asprin but we weren't sure if it would interfere with the lupus testing. He was meant to try and phone the professor to find out if I can (as August appointment is a long way off) but I've heard nothing back yet, as far as I know. He was really helpful and quite shocked at how DVH have left things. I showed him some of the photo's of my feet and face and his response was, "And they thought -that- was psychological?" *sigh* I've been signed off until September, pending the investigation into 'mixed connective tissue disease' as he seemed to be more concerned over that.
Not sure what I will do with myself until then.. I guess I better write more letters to the ESA/DLA. I might look into doing some courses, that might be a nice distraction. Maybe first aid.. lol :)
May: Constant symptoms
I arrived in Malta exhausted. There was no possible way that I could get any sleep on the plane (as I had previously planned to do). Got the bag and got a taxi to Sliema. Met up with my friends husband at their hotel and then me, him and his daughter walked down to the seafront, which wasn't that far but little tiring as I'm a bit pathetic right now. After lunch we headed back to the hotel to pick up the bags and make for the apartment that they had rented for the week. So, lugging all my stuff with me, we trekked across Sliema in seemingly any direction as they didn't know where the place we were heading was. I tried as hard as I could to keep up but my legs and everything else just felt like it was giving up and I dropped further and further back. Countless streets later we got to the seafront and the tiredness had turned into pain. My feet felt like they were going to burst again and that there were needles stabbing in to various places. My heart was banging, had the feeling of something cold inflating in my neck and then I started feeling the air bubbles. Made it to the curb and that was it, just collapsed in a bit of a heap. This is when my friends realised something wasn't quite right. They turned to help but for a while I couldn't really feel or move my legs. I don't know really if I was thinking at the time.. probably 'oh no'.. I felt more sad though. It's like, if I push myself into doing too much my body just refuses and shuts something down. This time it effected the right side with the arm feeling partially non responsive and the leg was just not working at all. They tried to pull me up but putting any weight on it caused it to shake violently. My friends husband got me to a chair and we sat there for a while. My face then drooped/spasmed on the left and the speech began to slur, like my tongue was just not capable of helping form words. I took my shoes and socks off and my feet were purple and swollen, almost blue in places, it was horrible. Apparently a policeman and some others stopped to call an ambulance but.. well what would that achieve? Only a hefty bill probably. It took about an hour to get back most of the use of the leg but once again I couldn't and still cant bend the toe or move the foot properly. God, it makes me feel so useless. It's like... I try my best to warn people/friends that I have limits and if break them I get very ill. I guess I feel so frustrated and am just screaming inside my own head because people don't understand. They see you look normal from the outside and assume that you have to 'look ill' to 'be ill' but that isn't the case at all. I warn people that things happen if I push too far yet I can't constantly be saying 'oh I can't do this, or that, or the plans have to change' because of me. Especially when you are trying to find the place you are staying and don't know where it is. I don't want to cause people extra hassle. Yet when I try to do things and bad things happen, those people look shocked and ask what the hell is happening and I just want to cry and make them understand.. yet I can't. I hate what people must think of me. Then afterwards I get told not to push myself as it's not worth it. So either I can shut up, not be a pain to people and carry on as 'normal' and be told 'not to overdo it' later, or I can be a massive pain in the bum and have to change all their plans to suit me. It was silly of me to think that I could cope with going so far away at this stage. I don't mean to sound ungrateful at all, I'm very lucky to have the opportunity to come here and spend some time in the warmth. Yet I feel nothing but a burden on the people I am with, I'm in pain most of the time, there's nowhere to hide and rest and it all just makes me feel like rubbish. It's a good experience though, it makes be recognise my boundaries more, be grateful for many things and hopefully help me work out things that I can do instead to at least help myself find a happier situation.
The rest of the stay hasn't been as dramatic as the first day but the tiredness is playing a large role in that, most nights I'm in bed before 9pm. The wake up pain isn't pleasant though. The pleurisy pain is kinda spreading right down my back now too. I came back earlier from Valletta today as I just couldn't cope with walking for miles and miles.. and miles. I'd love to be able to like my friends can, but I just cant. I felt my feet swelling, chest hurting and started getting dizzy so I decided not to push it again.. we were too far from the apartment! So I had a nice burger for lunch and then came back on my own. I hate to say it but I feel a little better on my own as I don't feel so guilty for letting people down or making them change their plans.
On a random other note, something I'm noticing is that I'm not healing, erm, very fast at the moment. I've had a thing on my arm since before V's wedding and it's not really gone down much. There are also two cuts on my fingers that, when my hand goes red and swollen, they have white marks round them. I guess I'm just worrying about everything right now, mainly because my whole life seems to be focused around illness. Oh, voice has been going completely for a few hours each day too. Usually later in the evening.
I went to the GP before coming out here and he suggested taking asprin but we weren't sure if it would interfere with the lupus testing. He was meant to try and phone the professor to find out if I can (as August appointment is a long way off) but I've heard nothing back yet, as far as I know. He was really helpful and quite shocked at how DVH have left things. I showed him some of the photo's of my feet and face and his response was, "And they thought -that- was psychological?" *sigh* I've been signed off until September, pending the investigation into 'mixed connective tissue disease' as he seemed to be more concerned over that.
Not sure what I will do with myself until then.. I guess I better write more letters to the ESA/DLA. I might look into doing some courses, that might be a nice distraction. Maybe first aid.. lol :)
May: Constant symptoms
- Collapse on exertion resulting in loss of mobility mainly in legs (pressure induces violent shaking in limb), slurred speech and facial spasm/droop.
- Loss of movement in left toe (continuous).
- Painful swelling in hands and feet.
- Poor circulation to feet.
- Pressure in head & headaches.
- Lack of coordination & dizziness.
- Feeling of dropping (at night).
- Very fast heartbeat, chest pains.
- Sharp pains in feet and hands.
- Loss of voice for a few hours a day.
- Pleurisy type pains in chest/ribs and back.
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