I had a mini seizure tonight. Not full blown fitting, but face swelling, muscles spasming all over, dystonic movements, shoulders and jaw trying to dislocate themselves, complete loss of control of my body and paralysis.

I forgot just how much they hurt. Jesus, I feel like I’ve run a marathon then been beaten with multiple baseball bats, then burnt with boiling water.

It’s really weird being able to feel the nerves in your brain going haywire. I was aware that it was coming from my head; it felt like all the veins in my brain were throbbing and on fire... It's so difficult to explain. I hate being lifted up out of bed like a child, I fucking hate not being able to go to the damn toilet myself. I was in so much pain with every single muscle that I couldn’t move at all for about three hours.

I’m proud of myself, though. I managed to stay very calm and collected through out the whole thing. (I thank EFT for that.) That was until; I couldn’t even make it to the bathroom on my own. I collapsed and started throwing up into the bath. Nice. Then I lost it and started sobbing hysterically. My carer was incredible. Very supportive, very professional. It made me wish I had her around when I was at my worst all those years ago... Because yep, this was the first kind of seizure I have had in 3 years. I’ve had seizure auras when I’ve been very unwell, but I never thought they’d progress to this again.

Luckily, or unluckily, my dad was out at the time. My mum doesn’t want anyone to tell him. I can understand this. My dad’s condition is so that he stays up worrying all night about dirty dishes. But I missed having him here. I miss being able to talk to my dad about this. Dad was always the one to sit with me when the seizures went on for hours. It reminded me that if I have a seizure in two or three years time, he’ll probably be joining me in having one himself. Providing he’s not been put into a home by then, which I really don’t want to happen. I’m pretty sure corticobasal degeneration can cause seizures. I witness his muscle spasms on a daily basis, so I assume fits will develop from them as his condition gets worse.

It’s difficult to know what caused this. I suppose heartbreak has something to do with it. My spasming also started 20 minutes after I had taken my thyroxine for my hypothyroidism. The thyroxine really hasn’t done me any favours since I’ve been on it. Therefore, I think I'm going to stop taking it.

Well, that’s my moan over with. I felt the need to get all of this out and remembered how therapeutic I found writing in this journal a year ago when I was very sick with the parotitis, so I've come back to it to have a bit of a whine. Right, back to lying flat now. Any of you who are inclined towards prayer, say one for me, kay? I really don't think I could handle these seizures happening on a regular basis again...

The parotitis/sinusitis/whatever the hell is wrong with my face returned two weeks ago. Luckily, it didn’t progress to the attractive, 'Rachel looks like she has a tennis ball in the right side of her face' - but it was still bloody painful and pretty darn swollen. My GP put me back on antibiotics and scared me by telling me I had to turn up at A&E if the swelling didn't go down by Wednesday the latest of last week. Luckily, the swelling did go down and the pain started to recede. Panic brought on by going into hospital was averted. I also managed to not go into shock this time. So, this infection must not have been as bad as the one I had in August. Emotionally, I am doing much better now. No more random crying fits :-) I think it's because I'm actually managing to get downstairs regularly for a few hours a day, not being permanently stuck in bed certainly helps ones mood!

I'm becoming very confident in the techniques I've learnt over the past two months when it comes to crystal healing and meditation. It hit me this morning just how much I've learnt over the last 8 weeks. I know how to channel my healing energy now. I'm amazed that I've finally learnt how to do it! I bought a crystal bracelet from eBay a few days ago, it boasted it came charged with Reiki and I didn't think anything of it, I just thought, 'ooh, need fluorite bracelet.' But when I put the bracelet on, I was astonished to feel this heat spreading all up my arm and into my whole body. Whoever charged that bracelet must have been one powerful reiki master! Or, maybe I'm just much more receptive to this kind of energy now. It's probably a bit of both. Now, I've always thought it a bit odd to give reiki or healing to things like crystals, I mean, why give reiki to a mere object when you could be giving it a person? But whoa, how wrong I was!! Charging a crystal with reiki or healing energy makes the crystals healing attributes five times stronger. Crystals, they are incredible tools to help with so many aspects of my life. If someone had told me 5 years ago, I'd be programming crystals with healing energy, I would have laughed and laughed. I've now learnt how to channel my own healing energy into each of my crystals, so I can programme each crystal accordingly. One to help with pain, another with sleep, another for meditation etc. I'm still learning, but I can already see the benefits. I've learnt how to protect my living area and my own space successfully... It's all very good stuff. Next thing up is learning to do Reiki from home :-)

Anyhoo, moving on to x-ray results. The reason I'm now calling the infection 'whatever the hell is wrong with my face' is because the scan I had on my parotid glands came back clear. And my ENT specialist was telling me I’d been misdiagnosed for 2 years with sinusitis and that I really had parotitis?? Me thinks this 'diagnosis' is rather inaccurate. What backs this up are the results of the CT scan of my sinuses. It shows I have an inflammatory polyp in my left sinus cavity, just under my eye and a slight blockage in my right sinus cavity. I've heard polyps are very common and I know of quite a few people who had recurrent chest infections/throat infections and investigations later found they had polyps in their chest/throat. Polyps were then surgically removed, and one no longer has recurrent infections. I've heard nothing from my ENT specialist; my parents have been trying to chase him up, but no joy. I'm guessing I'll get a letter in the post soon telling me I have an appointment and then I'll be told what’s to be done about the polyp and blockage.

Tomorrow, at 9 am, I'm having one of my back teeth pulled out. Yes, 9 am is the middle of the night to me, so I probably won't get any sleep tonight and will sleep when I get back home. The tooth I'm having pulled is the one the parotitis completely rotted. Surprisingly, I'm not that worried or nervous. Only... After I had the abscess popped above the problem tooth in early September, the bleeding kinda still hasn’t stopped. Sometimes I notice the taste of blood in my mouth randomly, other times when eating or brushing my teeth, blood appears. And it's now nearing the end of October, it still hasn't healed :-/ As a kid, I had a few teeth removed and had serious problems with healing. I remember there being lots of blood, not going to school and being very ill from it. This set me up for being petrified of dentists for life. But hey, aren’t we all?! I know it went down on my medical record that I have problems healing and persistent bleeding. Therefore, the dentist I’m seeing tomorrow will be aware of this and able to handle whatever happens. This is what I keep telling myself. Trained professionals and all that. Yup. I'll be fine. I'm not scared. See? And I am totally not going to think about the time I had all over body spasms from having a filling put in or think about the time I fainted from the electric drill. (Not from nerves, but because of the severe ME. Touch sensitivity, sound sensitivity etc.) I'm just reminding myself that if the bleeding doesn't stop, I'll just need stitches, which I'll be fine with. Yep. Me = calm & fine. See?

I'm totally crapping myself here.

Dull, I know, but writing all of the health stuff here saves me so much energy from having to explain the same stuff to different people. I'm also finding keeping this journal rather therapeutic. And the more therapeutic activities I’m able to do, the better, as I'm crying far too much at the moment. Now, the crying is not even brought on by my talking about the situation I’m in. I settle into bed for what I hope to be a rest, but instead go into a steady two hour crying fit. And I’m not even sure what its about most of the time. I guess, my basic problem is that I love life too much. I want to be out living it, instead of stuck in bed. And when I’m not out there living it, I go a little crazy.

So, I finally had my parotid gland scan and procedure today. Now, you all remember how I was hoping that the dye being injected into my glands would actually flush everything out? As my ENT specialist had said all of the swelling could just be a build up of dead tissue, puss etc and having such a procedure would make me feel better? Well, my face has kind of swollen up even more from having it done and I feel really, really ill from it.

The procedure itself wasn’t *too* painful. It's the aftermath of the procedure that I’m currently struggling with. A nice doctor did the procedure on me and found my relaxed state extremely funny. He said most people come in petrified, gripping his arm and questioning his every movement. I had taken some diazepam (aka valium) to relax my muscles in case I spasmed on him, so maybe it was my slightly stoned mood he was picking up in ;-) Of course, I asked him what was to be done and he showed me this very fine needle which would be inserted into my salivary ducts. I’ve tried to find a picture on the net to explain where ones salivary ducts are, but no joy. Basically, they are inside your cheeks, near the back of your teeth and are unbelievably tiny. Consequently, getting anything into them can be tricky and is rather intrusive. Anyhoo. There was this huge thing above me which I think was used to take x-rays. Unfortunately, the lights in this gigantic room were blinding, so I couldn’t have much of a look around and needed to put my eye mask on. There was this back room separated off with a glass wall from the operating bed I was lying on and luckily, my mum was allowed in there. My mum told me after that there was a TV monitor in there in which she could see the entire insides of my mouth and all of the dye flooding my ducts. She said it was fascinating, I wish I’d been able to have a look! Anyway, back to me needing to put my eye mask on. As I did so and lay down, the doctor started laughing, squeezed my hand and said "I wish all of patients were like this." I should have told him he should give all of his patients diazepam ;-)

The right side of my face was done first which was... Ouch. Painful. And such a peculiar sensation to be able to feel this dye going through. The left side wasn’t so bad. The whole thing took about 30 minutes and by the end of it, I was feeling extremely queasy. The iodine dye had a strong affect on me & I was very close to vomiting. And as I’d mentioned, my face was all red, swollen & puffy. Apparently, this happens to a lot of people who have this procedure. Me and mum were even given a leaflet about the possible side affects... "You may experience soreness and swellings, if these symptoms persist contact your doctor.." Blah, blah blah. And my ENT specialist said the dye could make me feel better??? In what way?!?!

My brother pointed out that this could just be my body reacting to how intrusive the procedure was and I could be feeling a lot better in a few days, so, maybe I will. Right now, I can’t even walk to the bathroom. Arg. That’s the one thing I’d been managing to do the whole time I’ve been so ill these last two months. After the procedure, I couldn’t even dress myself. I swear, that iodine dye did something to my entire body. Here’s hoping it will all be out of my system tomorrow and I’ll be feeling much better!

Right, on to the good news and not-so-good news. The scans showed nothing nasty - no tumours, no salivary stones. Doctor said that this doesn’t mean there is nothing there, I could have a blockage, he just needs time to have a proper look at them. I was kind of hoping it would be salivary stones, because then I would know *why* my face keeps getting so swollen. Doctor also said that people can just get horrendous bacterial infections of the parotid glands and it can happen to anyone with a low immune system. This was the worst thing he could say to me. It always comes back to my immune system or lack there of. If it weren’t for my bodies continual capacity to catch whatever’s going round, I would be so much better now. I’d be going out regularly, I’d be walking, I’d even be making my own food and probably wouldn’t even need carers. I’d still have ME, but my quality of life would be so much better. I know this for a fact. I can feel it in my body that the ME really can sort itself out. Through lots of careful treatments and management, I'd be fine. It’s just my ruddy no good immune system. But is my lack of immune system *part* of the ME? Or is it something completely separate? I’m so confused on that front. This is where we desperately need more bio medical research to be done into ME!!

Anyhow. My blood test results! I got them over a week ago. I don’t have glandular fever, but I *do* have an under active thyroid. I don’t know much about it, I know it’s a fairly common condition to have and if you do have it - you easily gain weight, get very fatigued from it and are more susceptible to viruses. After I received the blood test results, I wrote a letter to my GP asking if the under active thyroid was causing the parotitis? And can she offer me any treatment and where do we go from here, etc. But I’ve heard nothing from her. And I sent her the letter a week ago today. I’m starting to get seriously pissed off with my GP these days.

The next thing I’m having done is the CT scan of my sinuses, which is on 12th October, in two weeks today. I’m told after that, an appointment will be made with the ENT specialist again and we’ll then discuss the test results. It’s so frustrating with how slow its all going, I wish it could be sped up just a *little* bit...

I’m still having odd days where my face swells up again, my temperature rises to 101 and I can barely talk. Then the following day it goes down again and I can talk fine. It happened again last night, it really is very peculiar. So, I’m still very up and down. Things have got to get better from here onwards. Otherwise, I’m going to have to start seriously considering taking anti-depressants.

I haven’t seen anyone socially these last two months other than Sarah, and on both visits I was cowering under my duvet. I just hate people seeing me this ill, even when they are my closest friends... Ah well, I’ll have to get over it, because I miss my friends!