[Warning: Long Post! If you’re not interested/ already know you can skip this post and i’ll have another one soon.]
I suppose it’s time to take a little of my own advice. Winter blues has hit me hard the past few days. I didn’t really pick up on it until today. I’ve been sleeping reasonably well but feeling completely exhausted all day – my condition feeds of my exhaustion – so just makes things a little harder. I’ve the past few days just staring at my website trying to get something done and then feeling miserable when MrJeeby comes home and I’ve spent another day in my dressing gown. On the upside for such occasions like these, my full of excitement and energy self, typed up and couple of posts ahead of time. THANK YOU ME!
So without further ado…My plan in this post is to give you my IIH diagnosis story the least amount of babble as possible, this is still quite a raw event for me, it’s been a little over year but still every time i talk about being poorly I cry so excuse me if it’s a little messy to read.
If i think back now that I have been diagnosed and that understand this condition, i can pinpoint times growing up that i have probably had flares of this condition for most of my life. I always suffered from particularly unmanageable “migraines” around stressful events in my life, mainly around exam time. Having to quit boxing at around 16 because I was diagnosed with “blood pressure induced migraines” and sore specialist who had no other answers so could only really guess at migraines. Each time one of those flares causing my to become slightly more impaired but not in a way any optician would be able to see so I just brushed it off and finally forever having a problem with my short term memory, and thinking that was normal. Now, this could be chocked down to a number of different reasons so let’s just say for now that in late July of 2014 I got a head. Which never really ended.
GP VISIT 1 – I can’t really remember it starting to well, I remember saying to Mr Jeeby several times how different it felt. How i usually felt better after a sleep but whenever I slept this time I felt worse now and this headache also made me feel crappy in the evening but I felt kind of normal in the day. It felt strange. I left it a few days to see if it would wear off, My family are good at working through pain and don’t do sympathy so knowing I had to focus on my uni revision I just got on with it until it just didn’t seem to shift and continued to get worse. Eventually, I headed up to doctors who told me it was most likely a tension headache, the best i could do was take paracetamol and it will ease in it own time, probably when the stress is gone. It made sense, so I went with it.
GP VISIT 2 – Sure enough my exams and my presentation ended, i soldiered through the best I could and came out with what I wanted but still had a headache that had gradually gotten worse, along with a now stiff neck and sore shoulders to match. So I made a return visit to my GP who told me it just a bad tension headache that had now cause my neck and shoulder to stiffen, he sent me away with some stronger pain relief.
OUT OF HOURS GP VISIT 3 – I took the pain medication for about week which did nothing, by the Sunday I was in agony along with the other symptoms I was getting pains in arms but only during the evening, it unbearable. I spent most evening in tears. I had spent the entire week doing nothing on the sofa being unable to move and still all i wanted to do was cry partly in pain and partly out of frustration. Everyone was telling me that all i needed to do was relaxing and ALL I was doing was RELAXING!. I am pretty sure by this point my family thought I was making it up. How could I have been done nothing (but work my 4 hours a week cleaning job) and yet been in agony for 3 weeks straight, I had no answers. No one had any answers I was just being told the same thing.
Since the pain was worse at night and I was barely able to do anything during the day I was barely sleeping at night. I was keeping Mr Jeeby awake who still had to work and trying his best to care for me but didn’t know how. I was having to moving around my hours at work because getting in the morning was becoming more and more difficult, a week later and the pain medication the GP gave me was doing nothing.
GP VISIT 3/ MASSEUSE VISIT 1 – Back to GP, who was USELESS! By this point, I can’t move my neck. Like when you get a crick in your neck and can’t move it past a certain point. My neck felt like this constantly. I was so mad at my GP by this point told me to try getting a massage… (losing all hope I did)
I’ve never had a massage done by a professional before, this was my first time. I didn’t know what to expect. I found a lady who was on the way to work who would a massage for £20, it needed to be cheap since me and Mr Jeeby were broke at this point. She seemed nice enough, she was a little rough but got all the area’s I needed her to. Right after I felt amazing and went straight to work, it was the most relaxed I’d felt since the headache had started and I got a good job done at fi’s that day. I knew it was probably temporary but even £20 wouldn’t be that bad to help me get by….How wrong I was. The next day I COULDN’T BEAR TO BE TOUCHED I felt like id been beaten half to death at a bar the night before. I’d felt worse, honestly just wanted to give up then. She was so rough that I was bruised, i could barely move now.
OPTICIANS VISIT – After a few days of feeling hopeless I’d finally noticed how bad my eyesight had gradually gotten the whole time, I felt kind of dumb for not noticing before now. I felt so cloudy from the pain now I couldn’t really think but in a moment of clarity, I remember I had a £10 opticians voucher and wondered if my now very poor eyesight had anything to do with my headache so I set an appoint and off I went. The optician was lovely, I explained to him how I had been feeling, he seemed concerned but very professional the whole time. He dilated my eyes and boasted about how I had it done when I was young and how strong they were so it would bother me, then felt stupid when I nearly walked into the counter walking back though. He continued through the process without giving anything away. Only now i think back I understand how at hiding his concern for my wellbeing that day and I’m thankful for what a good job he did. At the end, he wandered out of the room and then wandered back in with a friendly smile on his face and calmly told me that I would need to go the hospital that day. He was very calm, knowing now what he though I’m not sure how he managed to keep a smile on his face a smile the whole way through.
I, on the other hand, wanted to cry. Partly out of fear and partly out relief that there was a reason for my pain. Mostly, in that moment, more out of fear. I am good at reading people, I am able to read people very easily and happy as this guy was pretending to be I could read the underlying fear he had for me. I think I tried to ask questions to distract myself slightly but I’m not sure now what they were. As much as i wanted to in that moment I didn’t cry, I held back every tear. He told me that I could go to the hospital until 2pm because they needed the drops to wear off before I got there so at least I had time to go home and chill before I needed to go. (thank god) ….I’m not sure i really remember getting home then. I know i walked because I wouldn’t have had any other option to, Mr Jeeby was at work so I was on my own. I walked home kind of numb, every possible thought was rushing through my brain then. This was probably the scariest part of my life so far…I made it home numb, and since my eyes were still dilated i couldn’t see my phone. I knew Mr Jeeby was at work so I need to ring my mum to tell her that i need to go to the hospital but I couldn’t read the text on my phone to find her number. Panic set in then, I was alone…basically blind and in hysterics and unable to call for help. I cried then, through fear and panic I didn’t know what to do. I scrambled for my laptop to see i could facebook my mum, knowing the key combination to make the screen go really big to see if i could make it big enough to see but it didn’t work, i still couldn’t see a thing, i was about to give up..just sit there and cry when I remembered…
Out of luck Mr Jeeby was most recent contact, by pressing green and green again it rang I was so glad he picked up quickly, I just tried to breath and hold back tears, it was the only way to explain I needed him to get mum to ring, he must have heard the panic and tears because he hung up quickly and mum rang straight back sounding hurried herself. I just cried then, i couldn’t really hold back, feeling so completely like a little lost lamb I needed my mum then more than ever. She came to my rescue packing me a bag and took me back to hers.
This is getting pretty long so I’m going to do this in two parts…GO AHEAD AND READ PART 2