You may think that I have been pretty slack with updating my Blog.......well you're half right!
Things haven't run as smooth as any of us had hoped, so whenever I had set some time aside to grab the laptop to give you all an update - sods law, I would get ill!
Where to start......??? The last time I updated this BLOG I was in the early, early stages of recovery. I had to keep my 45% angel and was still experiencing the lack of appetite and nausea from the op. Luckily now, I am well past this stage, although a recent relapse has brought on the nausea, however am glad to say that this has now passed again!
Approx 6 weeks ago, I revisited my consultant for another follow-up. I sat in the same waiting room I had all those months ago wondering what they hell was wrong with me and what my GP had meant when my MRI showed "signs inkeeping with Chiari Malformation". The room was packed, full of people of all ages, some showing the anxiousness that I must have that first appointment back last year, whilst others were on first names terms with the receptionist.
"These people are clearly regulars", I thought to myself - at the same time, wondering whether I would now become one of these "regulars"....??
After about 10 minutes of waiting, I started to feel really anxious again. What was I doing?? I had been here before, I knew my consultant, I knew what was wrong with me, so why was I so worried...? Pete picked up on the fact that I was worried and just held my hand and in the true romantic way, said "Come on moron, stop worrying!"
The reason I had started to get nervous was because I had been sat there long enough for my attention to be taken from the gorgeous channel shoes I had just spotted in the copy of Vogue I was reading, and wondering whether I could justify to myself that I needed them - to the fact of I was still unwell some weeks post op and was still experiencing some severe symptoms. Why was this, they told me that this op would stop all this - so what was wrong, something must be wrong as they are still here - WHY ARE THEY STILL HERE!!!????
Eventually we were called in to the room and instantly my consultant smiled and we both felt safe again -(Now this may sound silly, but after you have been through such an ordeal, such a major operation - probably any kind of op), basically putting your life in his hands, to see the man that got you through this safely, promising that I would wake up from the operation - YES, stupid me did ask this question) it is always so calming to see him.
Firstly he showed me my previous MRI (PRE-op) to show my extent of herniation....this alone was quite amazing. He explained and showed me the part of skull that they had removed to make room for the brain and fluid flow. He then asked how I had been and how I was feeling. I explained all the symptoms that I was still experiencing - the severe headaches, balance problems, visual blurriness and floaters, nausea etc. This is the bit I had been scared to hear - was this still normal or is there the risk of them having to operate again pretty soon to make the space bigger?(I had been told that if the op wasn't a complete success, then they would have to re-open the wound and re-operate) - I Stopped breathing.....his response was that these were normal and these will now just fade away with time. Breathe again!
OK, so these were normal, the time differs in all people and they would just fade away....I can deal with that! He then said that I would need a repeat MRI in Aug/Sept time so they can check the new spacing, check that the CS fluid is flowing as it should and that there have been no changes! He also confirmed that there were definitely no Syrinx - which to me, was as good to me as being told - Jaffa cakes only have 1g of fat! Result, WOOHOO!!!
We both thanked the consultant again and again and finally left the stuffy, but familiar waiting room. Next I had to just stop off for blood to be taken 4 months before my MRI - as if having to go through the horrible, scary MRI again wasn't bad enough, tests have now shown that MRI scans can actually damage your kidneys - Happy days!! I mean come on!!
When walking back to the car, I began to cry. I had been so worried about being told that my symptoms were abnormal post op, that I had worked myself up so much, I was nearly sick! I could see the relief in Pete's eyes, which meant more to me than being told that everything was normal. He has really been through it, as have my whole family and I hate that it is me that has put them through all this pain and anguish.
So, here we are on the 29th April and I am still having severe symptoms. I was due to return to work last Monday 21st, however on the Thursday prior to this I had visited my GP to sign me back in to work and to ask for some stronger painkillers, so that if I did develop a headache whilst at work, I could at least try and suppress it when I was there. The GP prescribed a painkiller that I began to take that Thursday night as I had a terrible head. From that Friday morning until last Thursday I had relapsed to the way I had been 6 or 7 weeks ago. The tablets clearly did not agree with me and made me absolutely terrible again. I returned to my GP on the Tuesday (my actual GP) and he told me to throw them in the bin, explained that I can't return to anything until the symptoms had resolved and signed me off for another 3 weeks. ABSOLUTELY GUTTED!
I feel totally deflated at the moment, I was doing so so well and was so looking forward to starting to get my life back, to get some sort of normality back and see my friends and colleagues that I have missed dearly. Instead I find myself stuck at home still, trying desperately to regain the normalness that I felt 2-3 weeks ago. All I am concentrating on now is trying to get better, so I can try and regain this normality back, as I was meant to on the 21st!
I would like to say a huge, huge thank you to all my friends, family and colleagues that have shown no end of support through this time. It's true what people say "You realise who your friends are at times like these...." - I have been lucky and I didn't realise I had so many beautiful people that care for me - I will never forget the love and support I have received!
Also I would like to say a thank you to my long lost friend Laura who recently found me on Facebook of all places! We haven't been in touch for 10 years and low and behold - she too is a chiarian. Our chats have helped so much over the past few weeks, even though I can talk to Pete or my Mum about how I am feeling, it is so refreshing to be able to talk to someone who "understands" how I am feeling, someone who knows the symptoms and knows what a depressing and unforgiving illness this can be. The one thing that Lau has said that makes the most sense is...
"....even though on the outside we look fine, on the inside we are not".
I feel that the last 3 and a half months have changed me slightly. I feel, even though it's hard to believe after reading all this, I feel like a new person, who has so much to look forward to. I am desperate to get back in the gym (Pete had to drag me before my diagnosis), I am definitely going to get back in to my hockey and have already arranged a team to join in September (I have talked about this for years but never actually done anything about it), I am going to call friends when I say I will and ensure that I reply to every message/letter that is sent to me, and above all, I am going to spend more time with my family, especially my beautiful niece and nephew who make me laugh so much, it hurts!
I don't want to come across as some weirdo who has re-evaluated their life for no reason, but it just shows that none of us know what is around the corner. I have always been one who had her life mapped out - until now! So, all I am trying to say really, is that I am now going to appreciate everyday - rather than wishing it was a Friday on my way in to work on a Monday morning, or stressing over whether we should go out for a drink on a work night...and most of all, I will never take things for granted again........well, apart from my husbands lack of ability to say no when I want to go shopping ;-)
If anyone reading this would like to have a chat, if you are a chiarian with a recent diagnosis, or if you have undergone the same as I have, please feel free to add any comments to this BLOG or get in touch with me via this BLOG or Facebook Group "Me and Chiari Malformation" x