Thursday, 23 March 2017


When I was at university a group of my friends gave me the nickname boffin (for those outside the UK please use this link for an explanation due to my ability to grasp complex facts or theories very quickly. It was also because quite often I would do excessive extra reading for subjects. When I was working in my management position (which seems like a lifetime ago) I was known for being able to regurgitate facts and figures after a quick scan of documents, quite often I would be handed briefing packs to read and then give a high level overview to the rest of the team.

That all disappeared when I became sick, my memory just shrivelled up and died. I couldn’t tell you what the day of the week was or the shift I was working. I simply couldn’t think straight anymore and my power of recall just disappeared. It has been something that has always really bothered me as I had a vast knowledge of historical facts and general knowledge. I used to absorb information like a sponge.I loved dazzling Jay with my knowledge when we watched quiz shows together.  Now I can’t tell you what the main characters are called that were in the TV programme I have just watched, on a really bad day I couldn’t even tell you the name of the programme.

However something really weird has happened over the last few weeks since giving up dairy 5 weeks ago and gluten on January 1st ( I have no idea if this is relevant at all but it’s the only major change I have had in my life) all of a sudden I feel more present rather than being enveloped in a bubble of fog. Yes I still use the wrong words for things, still ask for the wrong thing to be brought to me and look for my phone…...when its in my hand. Those things haven’t changed at all, what has changed is my ability to access my long-term memory. Before I literally couldn’t pull any information from the dark recesses of my mind, if I learned some piece of general knowledge more than a few months ago the details I would be able to recall would be hazy at best or nonexistent. Now for some reason I am beginning to recall information which is really bizarre.

Jay and I tend to watch Pointless ( ) and Eggheads ( ) whilst we are eating our dinner if we don’t have any cookery shows recorded. Once in a blue moon whilst watching these shows I would get an answer right, a cause for celebration as it was so rare. Most of the time I knew the facts were in there I just couldn’t unscramble the information it was like the decoder and connections were missing. It was particularly bad if you had to put names to famous faces. I knew they were famous but their names would elude me.

Over the last few weeks my ability to recall information has become a lot better. I am nowhere near the ability I had before I got sick but from the level where I was at this is a massive improvement. During numerous episodes of Pointless I have been able to answer every question on the board (apart from anagrams but I have always been shite at those unless I have pen and paper in front of me), I have also been able to put names to the famous faces. The improvement has been unbelievable, Jay has been laughing and telling me “You're on fire”. It makes me feel good when I can answer the questions as I had been feeling like my cognitive function had been declining rapidly I wondered if I would ever stabilise or get some of my thinking power back. This improvement has shown me that it’s still all there, I accept it will never probably be back to the previous 2007 and before level but it’s a massive improvement all the same.

Last year was particularly bad for my memory, much of the year passed me by in a blur due to the pain levels I was experiencing and amount of painkillers I was taking. However the painkillers reduced from before Christmas and it's now the 21st March. I was beginning to know exactly what it meant when someone said they couldn’t think straight. If it had been down to pain and the medication I would've expected the improvement in my recall and memory to have happened much sooner after Christmas.

Maybe it’s been a combination of reduced head pain / medication and the change in my diet? Who knows, without proof it’s difficult to say and what has worked for me may not work for others but I am almost back to Boffin status.

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Neurology CSF Leak update

I finally saw my neurologist this week and I have been officially discharged from his care, with instructions should the leak re-occur I am to be immediately referred back to him. He was genuinely chuffed that my leak has cleared up on its own and we spent much of my appointment talking about how difficult it can be to get a diagnosis of a CSF Leak and other conditions and how hard it is for patients when there is something wrong with them but they are met with medical professionals that insist that it's all in their heads.

He was explaining that many of his CSF Leak patients have spent a lot of time being pushed from one medical speciality to another whilst their doctors try to work out what is wrong with them. We both feel that I was very lucky my GP was so on the ball ( I miss you Dr J!) and recognised that the awful head pain I was suffering with was a low pressure headache. He said that many of his patients have spent months of not years waiting for someone to realise this was the case.

It’s so nice to have met this consultant and his team who have gone above and beyond to help me. Thank you.

Thursday, 16 March 2017

Moaning Again

It seems currently I can’t help myself, I appear to be moaning all the time in my blog posts. No outside observation has drawn my attention to this, it’s just I am starting to bore myself with it.

In January this year I went gluten-free after my mum’s diagnosis of Coeliacs Disease, four weeks ago I cut out dairy, which effectively means I am now vegan (after being vegetarian since birth). I am finding it relatively easy although in the second week I was craving cheese like mad. I did however work out it wasn’t the cheese I wanted but the salt it contained. I won’t lie I have found since giving up dairy the burning pain I had in the majority of my joints all day every day has gone. Which is great but the withdrawal from dairy has been hellish, for the first three days I had an almighty headache that I just couldn’t shift. Then recently I have had to endure the mother of all hidradenitis suppurativa flare ups, which has been incredibly uncomfortable and needing antibiotics to treat them.

I know its very early days in my whole food plant-based journey, 4 weeks is not enough to remove all signs of previous dairy consumption from my system but I really would have rather have the widespread burning pain in my joints daily than live with the pain my back is currently generating.

Monday I woke up with a trapped nerve which meant I could barely walk, the pain went from just above my bum, through my buttock, down my leg and into my foot. Most of Monday was spent chasing down pain levels that would have had me weeping with despair had I the energy levels. Tuesday it wasn’t too bad thankfully as for the first time in nearly a year I had a full head of highlights done. Luckily my hairdresser comes to the house but it’s still exhausting. By the time I got up from the chair I was left in severe pain in both arse cheeks. This was muscular in origin but it still really hurt. This morning I feel like I have been kicked by a horse in both bum cheeks, I have nerve pain running down my left leg and the whole of my pelvic girdle is on fire. Iliac crest pain for me is one of the worst types of pain I have to deal with as absolutely nothing stops it. I am currently sat on my heated throw hoping that once again a few hours of this will reduce the pain enough so that I can walk without pain.

Although I am sleeping better since the introduction of melatonin in January or maybe it was December (pain is just clouding my mind at the moment), currently I am exhausted from the minute I wake up. The quality of sleep is just not there and I do think my back is playing a major part in this. If it’s this painful whilst awake what the hell is it like when I am trying to sleep? I say trying because currently I am waking up every few hours feeling like parts of my body are being crushed. All this despite having a memory foam mattress and memory foam mattress topper. I feel groggy all the time during the day, like I have only just woken up. I hate not having a clear head as it feels like everything is a constant fight all the time. I can only describe it as feeling like I am hungover 24/7, which is disappointing when no alcohol is involved.

Even on days when my back is relatively ok by the evening the pain has returned, so there is no escape. When I can’t think clearly I don’t risk doing Pilates and injuring myself but it’s a vicious cycle. I need to start the Pilates to build up more core strength but I am paralysed by pain. At some point I will have to take the bull by the horns and just do it. But as I have said before part of my fear of doing the exercises is because that is how the leak started last year. I am also terrified of being stuck on the floor alone and having to call Jay out of work. I just wish I could wave a magic wand and have it all go away. I would then give everyone else a go on the magic wand and let them reap the benefits.

So I find myself moaning again, which I hate doing, especially when there are others out there much worse than me.