Speech Therapy

My eyes are stinging so much. I feel at the moment I've hit the point where some of the people I care about are just getting bored of me not being well and would just rather replace me with something more convenient. Just been crying and crying. I got a message but I'm not sure I understood it right but something about moving a day I was going to see someone. God, it's making me cry even more just going over it in my brain. I feel so stupid, I hate my body it's so rubbish and busted. I can't seem to do anything at the moment without breaking it further.

On Monday we just went for a short walk around the block - I felt as normal as I can at the moment so throught it was worth a try. As I was walking I was so out of breath and it looked like the floor perspective was all wrong. When I got back I sat down at my PC and suddenly felt very sick, like I was about to vomit. Went all shakey, stood up to look in the mirror and my face looked really pale. So I got my sick bucket and as I was trying to talk to my step mum, my face started to pull to the left and my tongue went with it. I tried to talk and all that came out is a slurred mess. The rest of the day was really scary, I was always out of breath, had burning in my head and I couldn't do anything. So stayed in bed with an audiobook and waited. The feeling of cold in my chest was horrible :( I know its so silly to get scared but I don't know how long to leave it before... well it's not like someone can help anyway. If someone could tell me that this problem is at least safe and its not going to damage my brain and limbs more than it has already I might feel at least a little more comforted. I feel so utterly useless. Just walking round the block and that happens..? The following days I've spent mostly sitting at the desk being immobile. Just going up and down the stairs makes me out of breath, I'm rediculious.

This whole thing is so complicated now. We discovered last Tuesday that if i push the spot on my head that sometimes 'burns' then I can talk normally. When I release it then my voice goes back to being strangulated. The same thing seemed to happen with standing and sitting. Then it would reverse. I just feel so odd inside. Everything feels weak and stupid. At times I would not be able to speak when sitting, then I'd stand up, my voice would come back and my ankles would start to feel numb then the legs go very heavy. Getting more tired and I just don't know where this is going to end.

We had an appointment with a Lupus consultant on Wednesday. They've taken lots of blood and I'll have a follow up next Wednesday. What was worrying is that the Dr there had all the old papers passed on from earlier appointments which already had incorrect information in them.. Why would these have been sent on?!  I didn't think of it at the time but it's so frustrating. I heavily regret not taking in one of my parents as when I got in there I was so overwhelmed with what I needed to tell him I feel that I messed it up. It's so difficult to talk, let alone put forward a case thats been going and not resolved in nearly a year! Seems to me that because medical professionals have a title, other doctors believe anything that's written from them and not question it, regardless of what the patient tells them. This most recent consultant didn't really mention the stuff which I suppose is good so far but if he bases assumptions on innacurate letters then... God I just don't know what the hell to do. I know it's wrong, but part of me wants something to come back positive so at least I can have something to work on and make better. Or at least make it managable so that I'm not having my face go wonky and collapsing randomly. I just want to understand what the hell is going on. I want to go back to work, back to life even. All I do right now is inconvenience people and that's about it. It makes me so so sad. I honestly don't know what I would have done without my parents, they've been so so amazing and it upsets me so much to put them through this. I just can't seem to get out of this hole and no one wants to help.

Today I've had speech therapy. The therapist there was very nice and talked to me about 'false chords' and such. On attempting to do the vocal exercises I became very dizzy and the room started to get very bright. It was getting harder and harder. She said, as there was no diagnosis yet, that she would treat it as if it were a 'functional' disorder (which rang certain alarm bells in my head). However, after a little while my real voice came through yet the feeling of an obstruction/lump grew more prominient. She suggested that might be in relation to something muscular. Then I had my voice, it worked as I knew it does.. Then the sickness came, the burning in my head, the heavy legs, the face pull to the left and my tongue as well. I slurred words to her to explain that this seems to be the trade off for being able to use my voice. At this point she seemed rather shocked, asked me if someone was with me and decided to stop the therapy there. She no longer thought carrying on with therapy such as this would be a good idea due to the reaction it caused. It was nice to see someone concerned, curious and a little shocked. She asked me 'how do you live with this' and I said.. well I have to, because no one is helping me or seems to be the slightest bit interested. Then, she went on to ask me if I would keep her informed of how things go and when they do find out what is wrong, to let her know. There have now been two people who have asked me to do this which is quite a nice thing to hear as it at least shows some interest and willingness to learn. Consltants pass me round like a hot cake, assuming its not their problem but they'll happily take the fees from Bupa. I wonder whether you would get a more accurate referral if fee paying was based on accurate diagnosis and recovery. We've only just seen a private health cover bill where the consultant has charged the company about £300 incorrectly by adding on 'surgery' and 'anasthetic' that were not part of the consultation whatsoever. We only noticed because the bill happened to be queried. Its fairly shocking, I wonder how many little extras are added on bills that the patient never sees? Sick people shouldn't have the extra stress of chasing up doctors and bills. It's just.. appauling. Side tracked there a bit but I feel quite strongly about this. So far I've seen about 10 private consultants this year and not one of them has done anything to actually help with the attacks or prevent them.

NHS hospital washed their hands of it long ago. I am hugely lucky and grateful that I have the luxury of private cover but looking over the past few months, I don't really know how helpful that has been and all I've got from it is hefty dosages of radiation.

It's not a happy day. :(

To keep..

As reference: http://www.londonlupuscentre.co.uk/hughes-syndrome/symptoms/

Sounds an awful lot like the second one down.

Today has been long and, I don't know.. I don't feel sick so I should be happy. I just feel weak, uncomfortable and cold. I seem to have developed an on off switch in my head. There is a specific point on the right side of my head where I feel a slightly bulging vein and sometimes it becomes painful, very specific spot rather than a 'headache'.. I think it also connects to the discomfort i feel at the base of my skull and down the side of my neck. Anyway, today I noticed that if I had my head tilted to the side on a hard wood surface, my voice came back fine. Put my head up and it went again. Then later on when I got the discomfort in my head I pushed on the 'painful' bit. Low and behold, the pressure or stuff released from my neck/back of throat area and I could talk fine, let go and the voice goes. These switches do seem to have a knock on effect to the weakness and heaviness in my legs and other limbs. Certainly seems like it's all connected. My legs have been very painful throughout the day too.. more than usual. Also laying with them raised while laying down is a very bad idea.

I 'spoke' with the Proff at LLC today and probably made a right arse of myself - how do you even begin to describe all this? Basically tried to tell him the situation and that we are very worried it will escalate to something much worse again. So I'll be seeing one of his colleagues next week on Wednesday. I really, desperately hope they can help.

I got a letter in the post today about the KCL 'Activation' appointment, which is booked for the following Wednesday on my birthday. Apparently 2 hours of hyperventilation and flashing lights. Great.. Just how I want to spend my birthday. I will see what the LLC say and hopefully they will help so that I don't have to go through the telemetry stuff.

New Episode

It's been building for days. I've felt it gradually get worse.

Tonight's post might be disjointed as it's very hard for me to type at the moment. Hands aren't pressing the right keys.

Tonight it all got a bit worse. Noticed that on standing up I got my voice back but this resulted in numbness in my ankles. I've made a recording on my phone. Did my blood pressure and pulse. On standing pulse increased and blood pressure dropped. I have a strange feeling in my chest and feel breathless. My arms and hands are shakey. Memory not working, argh!

Started about 6pm.. Whole right side was feeling weak, Electric shocks in right foot and right had, only mild, then voilent hand shaking but could talk. Sat down, felt lump rise and pressure increase up my neck then lost voice again and wave of cold goes down legs. I've recorded this on my phone. When I stand my legs get weak, especially the right. On pressure it shakes voilently. Feet feel stone cold. Right has a tinge of blue/purple colour around the bump on the side. Pains in feet and legs (similar feeling to having injection to wrist) and now sitting at desk, Can feel the lump/pressure in neck but can half talk, memory is slow, right leg aching and breathless. Using walking stick. Don't feel very well at all. On laying down, horrible sensation in chest.

Oh and now I have upset tummy.. and my chest hurts, yey.

Valve Please!

Oh gods the pressure just keeps building! Now, even if I try to whisper my head feels so dizzy. I can't even breathe and whisper! It's getting really uncomfortable and this feels exactly how it did before the January episode. Pushing at my neck or putting my chin to the right doesn't even do anything. So do I start taking asprin in case it is a clot or something or do I leave that until after speech therapy on the 29th?

So what do I do if 'it' happens again? I really don't know.. :( I'm really am scared to go back to DVH.. Urgh! Just the thought of it makes me feel ill.

Pressure!

My head and neck feel like they are being inflated with a footpump! Its so horrible and uncomfortable. My brain feels like its going to pop! Its not a headache.. I can't really call it that So much pressure! If I yawn I get a electric shock in my face. Everything seems very bright. Got a few tingles down my arm. Occasionally feels like someones pouring hot liquid over the inside of my brain and theres this uncomfortable pulling in my neck.. Urgh!

My voice is gone... again. Longer term this time. I lost it for about a week and a half, got it back for one day.. ate an icecream that evening and it went again. Last two days the pressure is so much that it hurts me and makes me so dizzy just to attempt to speak. I can hum, but not speak. I hate this.. I'm getting scared that a repeat of January will happen. I hope not.