Where have I been…??

On 21st January a twinge of pain that I had in my left shoulder on and off (I thought it was from bad posture and too much sitting g at the computer) got worse and left me with numbness right around my torso, I then got some weakness in my leg… As I was worried I immediately made an appointment with my GP who diagnosed me with a trapped nerve in my back. After a few days on painkillers everything seemed better and I was back to work! All seemed fine til on 21st February when I was driving home from work and sneezed while holding the steering wheel tightly, by the time I got home I had some pain in my left shoulder again… Over the course of the weekend the pain got worse and by Sunday I had very little use of my arm. I ended up in A&E where I was told I had either fractured my shoulder or had calcification of tendons. On 24th February I attended the fracture clinic where I was told it wasn’t a fracture, but nothing more! The power was still pretty much gone in the arm/hand and I was signed off work for a few days. I had to attend the GP later that week as I was anxious about the lack of improvement in the arm, by the following Tuesday there was still no improvement and I returned to the GP to ask for a referral to physio as the hand still wasn’t improving. She assessed my hand and felt it wasn’t needed however and gave me some exercises to do. It was her view that the issues were just due to having not been used much over the week and a bit since I’d hurt my shoulder. On that evening I felt the left side of my face was not 100% in my control and that my speech was being effected. My sister visited that evening and she pointed out that she could see issues with the left side of my face. On the Wednesday I had an appointment about my PCOS and I spent the day feeling like my tongue was too big for my mouth and that I was tripping over my words. That evening I finally managed to tell my mother my worries through a haze of tears (it wasn’t pretty-we’re talking full on snots and tears here!!) we decided that we would use my VHI cover to go to a private clinic the next day.

On the morning of 6th March we headed off to the Galway clinic and I cannot commend them enough! I arrived at 10am and was sent for an MRI by 11:30. When we got the results shortly after 2pm you could have knocked me with a feather! The scan showed that there was “something” on the right side of my brain and I was told I needed to be admitted immediately! At that moment “something” seemed like the most terrifying word in the English language! I was told that I would need to be transferred to Beaumont as it was the best place to be for anything neurological!

On the Friday morning I was told that I needed a ct scan before being transferred to Beaumont. I was sent for one that morning and walked down to have it done only to be told that I needed a blood test done first so I walked back to the room to wait for them. My mother and sister came in to see me and terrifyingly when I went to walk to the bathroom my left leg went weak. By the time I had to go back for the ct I had to go in a wheelchair. I was transferred to Beaumont straight after lunch by ambulance. When I got to my room in Beaumont I went to walk to the bathroom and collapsed. It took my mother and two nurses to lift me back to the wheelchair! Cue a week of being lifted essentially from bed to chair… That was the week my brain stole both my dignity & independence!

That night a member of the neurology team came to see myself and my parents at approximately 10:30pm and confirmed for us that I had a brain tumour and told us that the plan was to do a biopsy on the following Tuesday/Wednesday and see what further treatment was needed.He also stated that the good news was that we were dealing with a ‘primary’ as there were no other tumours visible on the scan (the unspoken word here was Cancer). We were understandably devastated and spent the night trying to deal with the news. The next morning two members of the neurosurgical team came in to talk to us and stated that they did not believe it was a tumour and wanted to do further investigation to be sure. They – or at least the spokeswoman of the duo – felt that whatever happened in any case was complex and she wanted to look to see if it was something auto immune… (After years of watching House I wanted to tell her that it wasn’t Lupus but blood tests to check for Lupus – and everything else- were taken over the next few days. On the following Tuesday (after numerous tests had been carried out) I was visited by my neurologist Mr. Muhammad Taufiq Al Sattar (a truly inspirational man) who informed me that it wasn’t a brain tumour but that I had in fact had a complex stroke (the backache/shoulder pain were in fact unconnected but the MRI scan showed I had a ‘sports injury’ of a bulging C4/C5 spinal disk which was causing the pain) and so would be transferred to the care of the stroke team and a consultant that specialised in that area. I was also moved from the room I had lived in for 5 days (with my mother) to a 6 bed acute stroke unit (on my own!) which was quite sobering… Partly because as I worked out at one stage we had a cumulative age of over 400… And I managed to bring the average down by a good bit!! It especially hit home how serious everything was when one of the men passed away on 18th March. We were bonded into a bizarre little team at that stage and all watched out for each other. I have to say as the ‘wee girl’ in the ward I was spoilt rotten and kind of adopted by “the boys” and their visitors! I also cannot commend the staff in Beaumont enough! On 14th March I started Physio and took my first steps in a week… I was told that I needed to walk as much as I could over the long weekend cue my first visits to the coffee shop not in a wheelchair! Once I got back on my feet progress seemed steady enough. I worked on being able to walk further and being able to walk unaided – although I still have a limp, even now – especially when tired.

After another week I was moved from the acute stroke unit to another part of the ward where I wasn’t being monitored quite so intensely… I kept that bed for two nights before I got a phonecall while on my first day release to say that I was being moved to a general medical ward as I no longer needed to be in one of the 10 designated stroke beds!

I remained in that ward for a mere 3 days before I was transferred to a hospital in Galway and was only 41 hours in Galway when I was transferred to a local hospital to my parents address. At this stage I was deemed to be medically stable and only required rehabilitation – daily Occupational therapy and physiotherapy – as I still had little to no power in my left arm/hand. For the last two weeks my life has revolved around OT and physio and regular home leave but I am one of the lucky ones and am seeing a good improvement with plenty of hard work! I was discharged from hospital to await surgery on 25th April – 50 days after going to the Galway Clinic- but the road to recovery is far from over as I still have surgery and intensive rehab in the National Rehabilitatiohn Hospital in front of me. It will also be many months before I can return to work, or to live in my own house or even drive!

At 32 this is not how I had planned to spend 2014 – my new life begins now as *my* normal is forever altered and life will never be the same again after this!

Worst bits:

Angioplasty – without a doubt the most terrifying and traumatising of all the many tests I went through

Loss of dignity/ Having to rely on others for almost *everything*!!!

Discovering that I am incapable of crying elegantly – it was always dirty big tears and struggling to catch my breath while scrunching my red face up! 😦

Not being able to go home to my own house

Not being able to blog,

Not seeing my dogs for a full four weeks and not knowing when I would possibly see them again during that time.

Having a douche of a doctor put in writing that I would be fit for work in 4 weeks time when the reality is that I will be doing well to be fit for work in four months time!!

What feels like an almost constant fight about small things like getting certs for work or to get back basic skills.

Positives:

Amazing support from family and realising who true friends are.

Meeting some amazing people (especially Mr Sattar)

Discovering my own inner strength.

Lots of very inappropriate laughter with my family.

I feel like this stroke has taken everything from me! I miss my freedom: my car, my house, my own space, being able to make my own choices about things! Luckily I am improving almost daily but there are still struggles and I have yet to have a cranial vascular bypass to try reduce the chances of this happening again.

The most important thing I wamt to say here is that if any of you or anyone connected to you have even ONE stroke symptom please get it checked out ASAP – time is brain as my specialist has stressed to me!

If you suffer leg weakness like I had back in January it is 72% likely you have had a stroke or TIA. Facial drooping and slurred speech is also a very common symptom that is almost certainly indicative of a stroke.

With a stroke the part of the brain effected is essentially dead and you have no option but to train another part of the brain to do its work – and believe me… its damn hard work!! One of the things that has kept me focussed is by reminding myself that I am not sick – every day that I have been physically able to I have gotten up and dressed and not allowed myself to wallow or get into a trap of self pity. I have an acquired brain jury – I am not sick!!What I need now is determination and to have the strength to keep working hard on my recovery – wallowing won’t do that!

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32 Responses to Where have I been…??

  1. Oh your story literally floors me, but I swear to god your attitude is inspiring.

  2. Jesus, reading it all in one chunk makes me admire you even more. I’ve really missed you around and I’m so glad to see you back here again, your attitude is just fantastic. I’m so, so happy that you are out the other side of it – I know there’s a long way to go, but I have every faith in you that you will get better and get back to the things you enjoy. I can’t imagine how scared and worried you must have been, you’re an amazing woman to be able to speak about the last few weeks so eloquently. Enormous hugs and best wishes xxxx

  3. Aisling says:

    What a touching post. It must have been a terrifying experience and here you are at the other side fighting hard and staying positive. Lots of people could learn a thing or two from you, myself included. You’re an inspiration and I’m so proud of you x

  4. robyntmorton says:

    You are truly inspirational. What I went through pales in comparison to your story, and I admire your positivity, even in the face of all that you have gone through and is ahead of you.

  5. Aundrea says:

    You’re incredibly brave m’dear, and so strong! I’m keeping everything crossed that every day will get easier. You’re a little bit amazing x

  6. Avril Joanne says:

    You are so strong and brave! I am in awe of you reading this. I wish you and your family the best and a good recovery! xx

  7. You’ve just been through so much I can’t imagine how terrifying this has been for you. Your attitude has been so amazing, really inspirational. xx

  8. Bridget says:

    This is a really brave post, best of luck with your surgery and recovery! Stay positive and you will get through this. X

  9. This is truly an inspirational blog post and I commend you for being able to put it into words. Although I had a different condition to you, so much of this has connected with my own experiences, especially the worry, the loss of dignity and privacy, having to rely on others for so much and how your life has now completely changed.
    The best thing is though that although it takes time, you do get yourself back to who you were before, even if it takes time. And even better news is that it sounds like you’re well on your way with that process! I wish you the absolute best with the next stage and if you need anything at all, even someone to give out to about nurses (I won’t be offended, i’ve done it myself in the past too! 😉 then I’m here! xxx

  10. For you to have come through all that is just phenomenal. I think this just shows how important it is to make sure you get that smallest thing whether it be pain checked out. I wish you nothing but the best and a full recovery! x

  11. It’s like a horror story. I read it amazed and then you put ‘Worst Bits’ and I thought, how much worse can it get? I admire your resilience and strength. I’m sure your family and your mum especially, were in pieces.
    The fact that you can write so eloquently about the experience demonstrates that you’re on your way back, even if it takes a while.
    I wish you the best of luck! x

  12. Regina says:

    Glad to see you back blogging m’dear! You are awesome! Big loves xx

  13. Amazing post I didn’t realise that it turned out not to be a tumour at all I thought you had a stoke and a tumour! I’m so delighted you’ve been looked after so well and that you’re making progress, it’s really scary to think things like that can happen to people our age as you assume things like strokes are for the elderly only. Great to see you on the road to recovery and your attitude is amazing!

  14. Oh my god, I had no idea. Thank you for sharing. Not knowing what was happening to your own body must have been absolutely terrifying :(. So glad you and your mother decided to seek private help. Who knows what would have happened next if you had relied on your own GP any longer!

    You seem so determined to work at your recovery which is just unbelievably inspiring and I am so happy you have found moments through this to laugh with your family and friends. I wish you the best with recovering and it is great you are able to stay positive with each day. Let me know if you need anything or just want to talk.

    Lots of love hun and stay strong! xxxx

  15. Hazel says:

    *wipes tears and snots away – seems I am not an elegant crier either*
    WOW! You are one very lucky lady. So sorry that you have been through all this. You were absolutely right to insist on getting to the bottom of it all. I wish you strength and courage to keep up the fight to full recovery.
    Thank you for posting and I hope that everyone looks out for each other, even if it saves 1 person, its worth sharing.

  16. Anne Marie, you are incredible. Seriously, seeing you out at the meetup, you wouldn’t know there was anything wrong with you. All my first world problems have just melted away. You are an absolute inspiration.

    I know you have a long road ahead of you, and I just want you to know that I’m here. For chats or anything. Always. Just let me know xxx

  17. Pingback: Phoenix from the Ashes – girlfridayslife

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