Truly difficult days

(18 May – note from Claire: I have left these entries as close to the diary form as possible because I think the unedited version illustrates the mental state I was in.)

19 March 2016
My head is stuffed with cotton wool. My neck is sore and aching.
It took 3 hours to get out of bed today but I did it. I even have a little motivation to do something – even if it is not get dressed or wash. Did a wee bit of moving clothes off the bedroom floor, bagging up and hoovering but after an hour I’m feeling totally knackered now. Been woozy all day and my frickin head is booming every time I move. Getting progressively worse.

20 March 2016
I’m really worn out today. Don’t want to get out of bed. And it’s noon.

21March 2016
Really down today. Slept through alarm. Didn’t go to work. Shame on me. Then I slept another 4 hours. Now my head and neck hurt and my ears do not like like sounds.

22 March 2016
Feel like a massive fail. Called in sick again. Depression rules today. I’m struggling to hold up my head. Big nausea, neck pain and pins n needles in eyes, eyes feel dim but I can’t tell if my vision is better or worse.

23 March 2016
Oh no not good. In fact a fuckety fuckoff ball bag morning. Since the toothbrush incident my mood has continued to slide down the crapper. I didn’t go to work the last two days. I called in today and whilst trying to explain I totally broke down and sobbed my butt off. Again. Embarrassing. I tried to get a doctor’s apt but couldn’t get one til tomorrow afternoon. I got so panicky and desperate I e-mailed MIND, posted on Facebook and IG letting people know I’m having a hard time (not like ‘hey guys I’m going to kill myself, but um y’know realky fucking struggling here if anyone has a second!’) I feel pretty weak and ashamed for doing it but it’s bloody hard reach out. Everything is just exacerbated by the fact that I am now convinced these symptoms are due to the tablets and no one will fucking help me!!!!! Goddamnit. Do I have to just make my own decision? I guess I do. I will beg the doctor tomorrow and take it from there.

Thank goodness. Dan came home from work after he got concerned by a shady text I sent him, and he is now off until next week so he is keeping an eye on me. Yes I’m probably going to lose my job now – but well shit – better my job than my life. Hopefully the last bit of embarrassment for today happened in my home. My legs went kind of rubbery, not sure if I was weak or unbalanced but I recovered it twice and the third time I fell on my bum. I yelped coz it bloody hurt, but then I had to immediately go into an all out baseball slide coz my knickers were already so far up my butt and the impact had jolted them halfway up my spine. Ow you fucker!

At 4.30pm, the pinnacle of my desperation, Dr G called and saved me. He said he had spoken to Dr P (neuro) and she OK’d me to wean off Topiramate and switch to Amitriptyline. Thank the gods.

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The Topiramate Diaries

15 March 2016
Certainly not my finest day but a small win in a sea of disappointing days. I got up. In fact I had slept badly and woke at 4.30am. So I went back to bed at 6am when Dan git up intending to have an hour of zzzzs before my alarms went off. Fail. I woke up at about 5 to 9. I got up and at first couldn’t figure out what I was seeing. Weird horizontal lines in my central vision? Nope. Halos? Shadows? Traces? Kinda all three. They were like Auras above objects. I held my arm horizontally and there was a ghostly line above it and parallel to it. Weird.

The next thing I noticed was a gleeful squealing STAB STAB STAB behind my ear. This headache had the personality of Moriarty from the BBC Sherlock reboot with Cucumberbush. It fucking hurt. Paracetamol did nothing but codeine did take the edge off.
I made it to work 2.5 hours late.
Yay me, since no one else will say it. I battled through the day on an inadvisable mix of codeine and caffeine and then staggered out of the door.

I somehow remembered that I needed to pick up cat food on the way home and whilst doing so I dropped a kilo of pasta on the shop floor. It exploded spectacularly. Crunch, crunch, crunch. ‘Sorry about that’, I mumbled to the girl at the til? my hollow eyes clearly conveying a lack of surprise at my clumsiness. I lacked the energy to give even half a fuck.

16 March 2016
A definite winner! Made it to work for 9am and stayed til 4.30pm!! Oh yeah baby. I feel like I contributed some good work too. I had crazy 3D vision and felt a bit like I might pass out this afternoon but hung in there and didn’t show myself up. Also my ‘not giving a fuck’ allowed me to not bow to peer pressure in a group situation when they were looking for volunteers. I am always the person who steps up, but not this time.

18 March 2016
Me eyes are feeling really bloody buggered. And my brain is just custardy uselessness. I wish I could explain clearly how slow and stupid I feel. I went to the docs but he’s not happy to reduce the Topiramate since he’s not sure why I’m on it (and I’m not making much sense). Though I did manage to pull the phrase ‘anhydrase inhibitor’ out of my butt (no clue what it might mean).

And when he said “yes but you don’t have a definitive diagnosis’ I responded: ‘correct me if I’m wrong but there is no other cause of papilledema than raised intracranial pressure. And whilst I may not meet the diagnostic criteria for IIH, clearly there is an increased pressure we need to reduce. Since my CT and MRV were clear…?’ He smiled and agreed I was correct. This is why I like my doctor. This is also why I cannot lose my brain! Anyway his only alternatives were to send me off to A&E – nope. Or for him to contact Neurology on my behalf to try and shuffle up my appt – dear god please let him have some effect please please please!!! I feel so unlike myself. It’s like I have forgotten how to think, and I just feel so blue.

Kill or cure: Topiramate

7 March 2016

Head woolly. Eyes unfocused. Ears hurt, pulsing and vibrating. Tinnitus really loud. Head full of pressure. No energy, no strength, no motivation. And my head hurts. Waiting for the Topiramate to make a difference to my symptoms.

At first it was wonderful feeling dopey and relaxed but that soon gave way to frustration that my brain wouldn’t work properly. I had trouble finding everyday words. I was standing in the kitchen trying to make lunch. I called to Mr L “Where is the…?” Blank. It was as if the word had been redacted and I could only use the closest thing to it.

“Where is the… big… sword?”

Sword?! FFS. Two minutes later the word sauntered back into my vocabulary. Knife. Of  course. Where the hell did you go Knife? This was just one example of really simple words which buggered off.

13 March 2016

A lot can happen in a couple of weeks whilst really nothing is happening. I felt no energy, no motivation, I couldn’t get out of bed, I didn’t even want to go for my tattoo appointment which I had counted down to for 3 months. For me this felt like the onset of a depressive episode, but I couldn’t be sure. I didn’t want to jump the gun when I was only a few weeks into treatment but equally I didn’t want to risk an equilibrium I have fought a long time for. My headaches, dizziness and nausea had finally reduced, but my vision seemed worse. Hmmm. Not good.

Then this weekend was… ugh. I went up to my mums to see my grandad in his nursing home it was very sweet we had a jolly little afternoon tea and colouring with some of the residents. Then the next day we got up early to finish clearing out my grandparents house. We were on a schedule and I was working really hard to show my mum that I was fine, but failed when I couldn’t find my toothbrush. I had picked it up and put it down again and I couldn’t remember where I put it. I felt like I was going crazy and started rummaging through my bags frantically whilst sobbing at my fear and frustration. My mum came in and obviously my ‘fine’ cover was blown.

On that night I stayed at my sister’s house. I was intending to visit my oldest school friend on the Sunday morning. Really stupid of me to have arranged this. I pushed myself way too hard way too hard with full days and early starts on no sleep. So of course I over slept on Sunday morning, couldn’t get on my feet, my head was spinning, my eyeballs felt like they were rolling in the sockets. I couldn’t even form words. So I just sent my friend a breezy message saying we might not make coffee and she sent one back saying well it might have to be next time then. We both totally misread the situation and hurt each other’s feelings. I thought we were having a casual coffee and she’d gone to masses of effort for my visit. She had no clue how sick I actually was (because I am a big fat liar) and so thought I was just blowing her off when she was already feeling pretty vulnerable. We both walked away dented. My emotions being turned up to 11 by these awful meds I then drove home 90 miles with tears and snot running down my face , I had to pull over twice because I could see even less than usual. Awesome, thanks IIH you dirty insidious little bastard, steal my health, my mind and my relationships too!

Back to reality – Part 2

24 Feb 2016

I went back to the hospital Eye Clinic as directed for “visual field testing”. The purpose of this test is to check whether my vision is restricted in any particular area, particularly the peripheral vision which can be lost due to swelling of the optic nerve. I left a good 20 minutes in my schedule for parking, but when I got to the hospital the traffic jam spanned from the main entrance all the way back to main road, with all car parks showing as FULL. I took a chance on an overflow car park so far from the hospital that I couldn’t even see it, but was fortunate enough to have my shortest visit to hospital yet.

The method used to test my sight in this case was the Goldman Field Test. In the usual way of optical testing I had to rest my chin on a little saddle, but instead of looking through lenses or at a chart, I effectively had my head in half a giant ping pong ball. The Ophthalmologist then used a series of tiny flashing lights to determine if there were any blind spots in my field of vision. It is similar to the tests performed at your optician, where you press a button to indicate when you see the light – but much much more subtle and accurate as the levels are controlled manually by the Ophthalmologist. I found some of it surprisingly difficult and disconcerting.

When we finished I asked the doctor if it was bad. She told me my visual fields are ‘not normal, but in line with what we would expect with this condition’.  Not terribly informative or reassuring. Why is it so hard to find out anything about your own condition?

25 February 2016

I made it to work. It had been a while. This day set a pattern for the next week or so in terms of taking my meds and the side effects I experienced. I got to work for 9.30am (somehow) took my Topiramate at around 10am after I had eaten. I quickly started to feel sedated, woolly and very stupid. This brain fog  lasted for around 2-4 hours. Nausea then set in at around 2pm – which reminds me I must get some ginger biscuits. This lasted about 2 hours on and off. I am now on the target dose of 100mg Topiramate per day and the sedative effect doesn’t seem to help my sleep in the evening any more, which is irritating as there are points during the day when I could fall asleep on a washing line. I’m also having flashes and floaters, dizziness and vertigo every day. Yay!

28 February 2016

Today was a weird day. I felt like an official spoonie for the first time. I see what my life might look like, realistically if this condition does not come under control. I got up at 10.30am felt bobble headed as usual but no pain. Ate my cereal whilst I fed the cat and brewed some coffee then D got up and we chit chatted whilst I made a little shopping list. I started to feel like a frickin moron due to the lovely Dopamax (the brand name for Topiramate in the US is Topamax. And it makes me dopey, so…) so I loaded the washing machine which obviously made me woozy. Whilst in the shower I lost my balance a couple of times shaving my legs and came out feeling pretty damn tired. I don’t know if it was the balance or fatigue but I needed to lie down before I could get dressed. But then the door buzzer went and it was D’s mum. I threw on some clothes, but was still too spaced out to make proper conversation. I really just really blinked at her for an hour or so.

When she left I was getting hungry and needed to go to the shop so I put a coat on top of my non-matching-no-underwear-outfit and went to the local shop ( in the car) to buy bread and milk and hummus and drain unclogger. Essential Sunday items. When I got back, I had to pause at the bottom and the top of the stairs to recover my balance and I nearly slid down the inside of the door after I walked in. Why am I so frickin tired? Anyway. I always get a slump at about 4pm when I hit a wall and I hit one today so I ate a little peanut butter sando, unclogged the drain, hung up my washing and had a cup of coffee.

It was only when I started making dinner about 7pm that I realised I am totally spent. My hands are shaking. I cannot lift the knife safely, I am staggering and weaving across the kitchen, I daren’t try to lift a tray out of the oven. I literally had to retire from cooking for the day because I cannot keep myself safe. This was a reasonably active Sunday for me, in terms of recent days but I wasn’t running around like crazy and I totally exhausted my resources! I don’t know if this would count as a good day or a bad day in my future imaginary spoonie life but I finally understood what it means (physically anyway) to run out of spoons.

I’m lucky I have Mr L. Very lucky! I might be eating cold macaroni cheese from the kitchen floor with bandaged fingers right now if not for him

Back to reality – Part 1

I slept for a good 12 hours when I got home. I woke up with a huge headache and back pain. I took some ibuprofen for my back and some paracetamol for the pain in my noggin. It didn’t help a lot. I rushed to get ready and set off back to the hospital to pick up my medication (unfortunately Hubster does not drive, I would have been glad to hand over this task). By the time I got there I was feeling bad. As bad as I had done in the past few weeks. I was sweating, shaking and my head was booming. I can best describe this pain as a frighteningly bad hangover type headache.

Silly me I had been in such a rush to leave the night before that I forgot I was supposed to ait for a call before turning up on the ward for my medicine. Oops. Just another example of the brain fail effects of the condition. Nurse P said I could go and chill in the day room whilst she went to the pharmacy. By this point my headache was about 5/10 on the pain scale. For me this is high and I was rather wishing for some codeine and a place to lie down. I believe this could have been a low pressure headache caused by the LP or at least a reaction to the procedure – but hey I could be completely mistaken. All I know is that it as painful to the point of distraction and as making me sweat. Eventually Cool Male Nurse brought my pills and I escaped for the second time with a pillow case full of drugs.
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Over the next 8 days I was to up my dose of Topiramate from 25mg to 100mg per  day. At first I was nothing but sleepy. One night I slept twelve hours, got up for 3, slept another two then napped again in the afternoon – sloth life! I felt woozy and a little nauseous but my headaches disappeared. On the 3rd day of the drug I got the first hint of pins and needles in my heel, I had been warned to expect this so I wasn’t concerned. In fact I wasn’t concerned about anything. It seems that the mood stabilising properties of Topiramate had started to take effect and gave me a lovely feeling that “everything is fine and I really do not give a fuck”.

21 February 2016 – I cut my hair off.

It was short anyway, but the top had grown out. I had always wanted to do this and the ‘Dopamax’ said I could.

So I just went in the bathroom and started chopping with a pair of kitchen scissors.

It looked OK. Then I dyed it purple. This type of recklessness is not entirely uncharacteristic but I would say the drugs definitely removed some of my anxiety and inhibitions. Perhaps not a good thing? But I felt marvelous. This should have been the first warning sign.
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23 February was our wedding anniversary and I felt well enough to go out for a couple of hours. We decided to go out early and got a table at a very popular restaurant just outside the city. The food was very exciting – I had a steak burger with pulled pork on a brioche bun, served with a honey chipotle bbq sauce – pure heaven! I also decide to be a little reckless and have one teeny glass of wine. You know those 125ml glasses that hardly anyone uses anymore? As that went down so well I asked for another but I had taken no more than a mouthful when my vision went. It was as though I had drunk the whole bottle. Uh oh. I felt fine. My appetite was better than it had been all week, I didn’t feel any more nausea than usual, it seemed that just my eyes were drunk! And yet to drive home. Good grief. My eyeballs were so SHITFACED they wanted me to lay down on the table and sleep. How we arrived home in one piece I am not sure. Was this the end of my drinking career? When we got back to the flat I literally flopped onto the floor, telling D that I was a carpet or some such nonsense. After about 20 minutes I suddenly regained my senses and felt perfectly normal again.

Getting out

17 February 2016

I had been visited by a doctor every morning after breakfast and told that my CTV would ‘hopefully’ happen today. Despite the apparent joy of spending whole days in bed and being brought food on trays I was getting bored and pissed off. Plus I wanted to know what the hell was actually wrong with me and what we were going to do about it. Given what I had read about the debilitating nature of IIH I was almost hoping for SOMETHING to appear on my scan. I understood that they were checking for thrombosis (blood clots) or stenosis (narrowing of the veins) either of these could cause the pain and increased pressure. Whilst thrombosis can be scary and potentially dangerous – think exploding aneurysm – the solution is at least theoretically simple, break up the clot and the problem goes away. It’s a similar story for stenosis – insert a shunt (a magical mesh which hold veins open) and the problem can be resolved. They don’t even cut into your head for this! They just push up through the vein from your groin, into your brain and deploy the shunt! Incredible. You can tell I did a lot of Google surfing whilst in hospital.

IIH on the other hand is a mysterious condition which does not present a threat to life and affects so few people that it has not been fully researched. Drugs may or may not work, but these are drugs designed for epilepsy, seizures, migraines, psychosis, water retention and so forth. Surgery may also be an option, but it involves tubes and valves being placed in the body where they were never meant to be. These invasive devices can clog, malfunction, or otherwise damage the body in which they reside and  cause a whole bunch of other issues for the patient. There is also the fact that IIH is a chronic condition. Meaning lifelong – manageable but not curable. To sum up, I was not hoping for a diagnosis of IIH and a clear scan result did not mean the end of my worries.

On the morning of the 17th I was visited by three young doctors, one of whom was a junior on her first week. I decided she would be a willing, enthusiastic and determined person so I told her that she would be responsible for getting my CT today. I told her that if she didn’t I would hold her personally responsible. I said I understood that the squeaky wheel gets the grease and they didn’t want to hear me start squeaking. Somehow I thought this threat would be impressive and powerful. Ahem.
Nevertheless, I did get my scan that day. Not the one I had been expecting mind you.

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They took me for an MRI. I said to whomever would listen, that I was supposed to be having a CT Venogram and I was quite sure they were different. I had been walking around with these cannula dangling out of my arm for a week now, so I knew I was supposed to be having dye injected for my scan. The person operating the MRI checked her paperwork and said “you are having an MRI today”. Fucksticks. Ah well, I thought maybe I’ll get the other one afterwards?
I was asked to lay down on the sliding table. A pillow was placed under my knees and I made sure I had removed everything metallic (except for one piercing below the waist, which I was semi confident wouldn’t  be affected). A plastic cage was clicked into place around my head – I did not like that. I was given a squeezy bulb and told to use it if I needed to stop. I put in the earplugs that they handed to me and they reiterated that I must stay completely still. I was actually feeling quite nervous by this point. The table retracted into the big white tube and the machine began to fire up. It was extremely loud and I could see vaguely spinning white walls around me. The scan took about 20 minutes I think, maybe even less. It was scary, relaxing, claustrophobic and boring all at the same time. When I came out of the tube my whole body seemed to vibrate.

Feeling quite dizzy and discombobulated I wobbled back to my wheelchair and was whisked back to the ward. When the nurse came in to do my afternoon observations I questioned her about the scan as I wanted to be sure it was the correct one. She confirmed it was and that when Dr P had checked the notes I would be able to leave! Hah! I didnt expect the wheels to be in motion until the following morning but sure enough, Dr P came to see me during dinner. She said that the scan (which had actually been an MRV, you know, the scan I had been scheduled to have a mere four days from hence) was clear and three was no sign of thrombosis or stenosis. She said that my LP opening pressure of 24 was not really high (normal is around 10-15, but 25 is required for a confirmed diagnosis of IIH) but she would start me on a drug called Topiramate which would help with my symptoms. She would also send me back to the opthalmology dept for another test and see me again in a couple of months. As soon as my meds were ready, she said, I could go home. Home! To my bed and my husband and my puss cat and my privacy. Yippee!!

Impatient inpatient

I know – terrible title. I’m lousy at puns, so you get whatever falls out of my brain at the time. The day after the lumbar puncture was Valentine’s Day. Me and the hubster don’t usually celebrate but I was feeling vulnerable and needy so I made sure (via our inconsistent wifi exchanges) that he knew he needed to come and visit. He did, but he brought his mum with him and they didn’t arrive until 30 minutes before visiting ended so I was not impressed. I can be a moody biatch sometimes. Plus my back was sore and I was generally getting fed up of waiting. But they did both bring prezzies so I guess I forgive them.

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Lots of people I have spoken with about their experience of raised intracranial pressure describe the sensation of relief after an LP. How their headaches and tinnitus are gone and they feel so much better. This relief can last for months for some people. Personally I did notice that my tinnitus had gone and my head seemed lighter, but this lasted for oh, about 7 hours and then the pressure started to return in the form of head stabs, sore eyes and the good old ear alarms.

They say that when things get tough, or you are in need, you find out who your true friends are. I received a lot of Facebook messages and shows of support, which was nice don’t get me wrong, but there were a special few people who made the effort to come and visit me or send me a card. These are people I don’t see often and who I have often flaked on. People for whom this was not just 10 minutes down the road. You people know who you are – I think you are wonderful. One of these rad folks spoiled me rotten with treats and crafts to play with but sadly the day of her visit was also my scariest experience yet. I didn’t want her to leave, so I got up to walk her to the exit door. When I stood, my vision got darker than usual and tunnel vision zoomed in so I could only see a small space in the centre, which was obscured by swirling black smoke. Around the edge of my vision was pitch black, not grey and fuzzy like usual.

I saw my friend out and kept smiling but I staggered back to my room afraid. My head started pounding and there was a deafening whooshing in my ears. I felt like I was sinking or I was going to pass out. I leaned against the wall because I feared the embarrassment of fainting and being picked up by nurses. Stupidly for someone who things they may pass out, I went into the bathroom and sat on the toilet seat. I was terrified. Not terrified of what was happening so much as terrified that this was my life. I started crying, at first I was able to stifle the noise but then I started to really sob. I think all of the pent up nerves, negative thoughts I had been hiding, fear, self pity and frustration came flooding out. I realised that I had been doing a great job of being cheerful because I hadn’t acknowledged that there was something really wrong. I had intellectually examined the situation and decided it was manageable but I hadn’t felt anything as I had been focussed on ‘getting through it’. Seeing concern on the faces of other people and then feeling physically suddenly so vulnerable for no good reason hit my emotional centre like dynamite. I did not avoid embarrasment of course because a lovely nurse came to check on me. Although I didn’t agree with her that god was the answer to my suffering, I did appreciate her kindness and compassion.

I lay on the bed after my tantrum and my head was fit to burst. The whooshing in my ears took on a frightening machine like quality that drowned out everything else for half an hour. Crying, I learned, is not compatible with high pressure! I also learned I do not want to feel like this again.

Facing my fears #1 Lumbar Puncture

13 February 2016

In my last post I concluded that I slept like a baby once I got onto the Neurology Ward. That was the case, until I was woken at midnight by Random Doctor who said “We are going to do your lumbar puncture now”.

My heart starting thudding immediately. This procedure was something I dreaded since I first realised it would be necessary for a diagnosis. A massive fucking needle piercing my spinal column?! Sucking out my brain juice? Nope. Nope nope nope. Terrified is not an exaggeration. I also had been told three or four times now that I would be having a CT venogram, to check for thrombosis, before I had the LP. I had read somewhere that it could be dangerous to have the LP before the scan, due to the potential for a haemorrage. So although I was in panic-mode and half asleep, I told Random Doctor that I would not be having my LP tonight, thanks. He looked at me with a weary, patronising expression and asked why. I explained my concerns. He didn’t argue, but he did make me repeat my reasoning in front of a nurse, I assume this was to protect himself if I died of a brain bleed in the night.

When I woke up in the actual morning the hospital routine started. As I said, I’ve never had a hospital stay before so it was all novel to me. The day started with a nurse taking my blood pressure and pulse and temperature and asking if I had any pain.  I did feel pretty woozy and had a little headache but nothing I was concerned about. Next came breakfast at about 8am – cereal, toast, decent coffee once I had instructed them to make it 3x stronger. After I ate though I got really woozy again, my pulse was pounding and my vision went quite grey around the edges. I was lolling in bed struggling to pull my thoughts together when I first met my consultant Dr P. She had a businesslike but human demeanour that I very much respected and she spoke to me as though I was an intelligent human capable of understanding medical terms. Which I was due to Google and the FB IIH suport groups. She reiterated that we were looking to confirm or rule out IIH and whilst she would try to hurry up the scan, the risks of doing an LP first were very minor indeed. She reassured me in a way that no one else had been able to do. She also said she would give me a Valium to take the edge of my anxiety. I won’t lie, I was so relieved that I did a little cry.

At 4pm the time came. A young male doctor came to give me my Valium and said he would prepare for the procedure whilst I tried to relax for 10 minutes. We were doing the LP in my room on the bed (I said a big thank you again for my side room). The Valium did help me to slow my breathing and relax my muscles for a short period before we started. I was then asked to lie on my side and pull my knees up to my chest, tuck my chin down and stay in this position. He reiterated that I must stay perfectly still. Now I’m not a skinny girl and it is not easy to relax and take calming breaths in this position, it is difficult to stay in this position full stop. I had a nurse to help by holding my knees and my hand for comfort. First came a few minutes of bony fingers pressing hard into the sensitive flesh around my spine. It felt like someone deliberately trying to cause pain with their knuckles. Next came the anaesthetic injection. That felt weird and not good at all, I jumped, however microscopic a movement it was, it felt like I leapt into the air. It hurt my friends, but what was worse, was the PUSHING sensation of the fluid going into my spine. Ugh. By this point I am sweating and gritting my teeth. Next came the actual LP needle, which I had deliberately avoided looking at. I don’t think I felt a piercing or penetrating pain, but it was so very slowly manoeuvred into the correct space in the spinal column. It has to go through tissue, between vertebrate, past nerves and into the space where the fluid flows freely. The Dr cannot see all of these I internal gubbins so he relies on knowledge, expereince and the guidance from the patient. A big pain, I gasp. He asks “where did you feel that?” I manage to say “back”. This happens again and then the third time I get a lightening bolt down the top of my thigh to my knee. I don’t know how I managed to stay still. “Knee!” I squawk. “Ok great, we are nearly there” he says. And thankfully we were. He started to draw fluid and I felt the odd pushing turn into a pulling sensation. He told me my opening pressure was 24 and he took several vials of spinal fluid for testing. And it was done.

I felt like a fucking superhero for getting through it. I was completely drenched in pungent fear sweat, my clothes were soaked, but I felt I intense relief that it was over. The nurse instructed me to lie down flat for two hours and do not sit up at all. I appreciated this advice, which I had already found out online was to prevent the possible headaches which come of low CSF pressure after an LP. So I was a good girl, laying flat, sipping cold coffee through a straw. When dinner time came around, I declined to sit up and eat, so one of the lovely staff arranged for me to get a ‘call back meal’ at around 6.30pm. This was a microwaved curry which sounds quite dire, but I swear it was the most delicicious meal I ate in my entire stay.
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Fool me once

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11 Feb 2016

Arriving at eye casualty at 2.30pm is really not a good move. But I had to be smart this time. I had been home, showered, got cash, eaten, packed a bag, changed, charged, my phone, picked up my tablets, put petrol in the car and fed the cat. I was set baby. Mmhmm. So when they told me that appointments were running approximately three hours behind schedule I just smiled and pulled out my book. When the triage nurse told me that if wasn’t get seen by 5.30pm I would be in for a really long wait because only one doctor would be on call, I just smiled and said “I’ll wait”. As it happens I was seen at 5.20pm and  after the same routine as before – plus an exceptionally thorough testing of my retinas under pressure and of the intra ocular pressures – I was once again sent to the MDU.

Lovely Nurse Priscilla and her colleague prepared me again by sticking on those electrode thingummys and stealing my blood and soon after that I met with a doctor. Dr A said I would need to get a CT VENOGRAM, a tune of scan where they inject you with a contrast dye which helps the radiographer see the blood vessels more clearly. Optimistically Dr A set me up  with a dangly cannula – difficult given my teeny veins – so respect to him for not hurting me! Then I met registrar (and hottie) Mike, who confirmed this plan and offered me the option to go home. Aha! We have been here before haven’t we friends? The old ‘come back tomorrow’ routine. I had to explain that whilst I felt well enough to leave I did not trust that I would be called back ‘urgently’ as I was still waiting for my scan from the previous attendance. When I mentioned this he did say “Oh yes your records show that you failed to attend for that scan”. Erm WHAT? No wait WHAT THE ACTUAL FUCK?! I failed to attend what exactly? Now I was reaaally pissed off. So I was staying in and that was that.

A ‘bed shortage’ seems to have hit lots of hospitals in the UK recently. I understand this to mean that hospitals have experienced a higher than usual number of inpatients or that they lack the staff to get beds cleaned and ready for new patients fast enough to meet the demand. I assume that the beds themselves are not in short supply. But I could be wrong. The point of this ramble is that the first night I spent in hospital was actually on the MDU which is not technically a ward, but an emergency clinic-slash-waiting area for non urgent patients who are waiting for admission. The only other time I spent the night in hospital was when I had my tonsils out about 12 years ago. I can’t complain too much about this set up. I have my jammies and my book and have been able to let my husband know what’s up.

I’m warm enough and I’m tired so I think I might sleep but ahahahHAHA no. In the MDU tonight we have a couple of quiet ladies and a couple of chatty ladies. One very chatty and needy older lady who had no volume control and one poor girl who coughed violently all night. And someone who shored even louder than me, despite sleeping with an oxygen mask on.
In the morning I was loath to open my curtains but nurses and care assistants must be taught (like the matrons from old Carry On films) don’t let patients loaf around in bed all day, wake those mofos UP! It matters not that they have nowhere to go, just wake them up and start feeding them. So, over coffee and cereal I got aquainted with the other ladies on the ward. I regret my terrible memory for names and I’ll be honest and say the names only stuck with me for about an hour but for dramatic  purposes I will name them again. Aggie, aged 50, was the snorer next to me. She had been collapsing and had skme problem with her heart, she had been on oxygen for the last two days as she was struggling to breathe, but she seemed very optimistic that she would be going home soon. Jenny in the bed opposite was the sweet young girl, with a violent hacking cough which hurt to hear it. Jenny told she had pneumonia! And though she had already been in hospital for 4 days, they had not yet found a permanent wars for her and she was expecting to stay for at least another week. A week! Hell I couldn’t imagine how bored and tired I would be. Next to Jenny was Maxine and she had a number of things going on severe allergic reactions, anxiety, chest pains, problems breathing, possible infectious diseases. I was just thinking don’t touch me, don’t touch me…Finally there was the older lady on the end, Doris, who had taken a spill it seems, possibly had a seizure and struggled to get mobile at all.

Just as I was settling in to my new surroundings some porters arrived and told us we were moving. I was glad because not sleeping and then making polite small talk had made my head sore. In truth we moved about 20 feet down the corridor to the next bay. One of the nurses – a cute little thing with dyed red hair and tattoos- had taken a shine to me, recognising a kindred spirit by my Adventure Time t-shirt and stretched earlobes. She whispered that I could have a private room if I wanted. “Yes please!” says me, thinking sleeeeeep! Perhaps others might have thought it a little rude to choose then private room rather than joining my new comrades on the ward. The thought did cross my mind, but to be honest I find small talk exhausting and I love the quiet. The 8 minutes sleep I had the previous night was just not cutting it.

Sadly I was then moved – after Dan came to see me, to Ward 12 which is basically a random ward. I imagine you would get all sorts of every thing on there, broken bones, scrapes, diseases, accidents, gastro problems, flu, the lady next to me seemed to be almost comatose. It was a crazy place and I didn’t like it at all. (I am aware I sound like a brat, maybe I am, but I was tried and vulnerable and fairly grouchy). The head nurse attempted to introduce herself three times before running off, instead a trainee nurse asked me for a urine sample and a nasal swab. I responded over cheerfully, but pushed the sample cup to the edge of my side table outmof sight. Eventually I got down to messing around with my tv and eating a massive plate of fish and chips. I know Mr L wasn’t supposed to be there at meal times and I was very conscious of his presence but so didn’t want him to leave me there alone! It just seemed like chaos.

Thankfully and porters showed up again and I loaded all my baggage on the wheely chair and got speeded off to the Neurology Ward where, HALLELUJAH, I was given another private room. Although I wasn’t allowed to turn off all the lights in my room, that night, helped by codeine, I slept like a baby.

Interupting cow…Moo!

I’m interrupting the narrative flow of my own origin story simply to tell you that I’m having a good day. In fact, I’m having a good few days. When I started the blog I was in a bad head place. I mean that as comprehensively as can be. My mental health had really deteriorated as a result of the medicine I was taking to combat my IIH symptoms. My memory and thinking were completely ballsed up and my decision making and ability to handle ANYTHING was destroyed. Sadly the drug, Topiramate, has the longest list of side effects I have ever seen and number one on that list is the potential to affect mood. You can read more about my pitiful descent into misery and madness in the coming days. Ooh gripping.

Thankfully  I have weaned off that evil* drug now (*IMHO and no quantifiable way). So I am regaining my capacity for thought and creativity, along with anxiety and sleeplessness. I am also very slowly regaining the IIH symptoms, which I didn’t even notice had been gone! Presently I am in between and in great form. My symptoms are not too terrible and the Topiramate has almost all gone from my system so my brain is working. This means I’ve had a sudden flurry of energy and activity and been almost rather adult in some ways. I bought new (to us) cooker with a posh induction hob and catalytic self cleaning oven. We cleaned the whole flat – almost top to bottom – and I made our bedroom look fabulous. My car passed its MOT today, only needing a bulb, which cost me 99p! And today I have been researching how to restore antique furniture and how to trace a family tree.
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Good grief am I old? Or middle class? Oh no. No no no, that all sounds very very middle class. Urk. And grown up. Double urk.

It’s ok Claire, do not worry. You still live in a very ropey neighbourhood, your living room has no wall paper and bare wires hanging from the ceiling. Your 14 year old car has plant life growing on it and you answered the door to the postman in your pants this morning. You are far from mature and still live very much like a squatter.

Hah. Alriiight. Though I did buy pans with a 10 year guarantee too…