Hi from Milton Keynes and Diggly Dog

[DigglyDog]

I've just found this forum site and have spent the last couple of hours looking through some of your experiences.

 

Nothing unusual in my story. We were on an extended tour of Europe in our motorhome and slowly making our way back from Albania, decided to go back via Brittany and just wombling up the Atlantic coast.  A sudden headache, and stopping to get some sleep seemed the best bet.

 

I woke up 2 months later, back home in Milton Keynes having spent the time recovering from the initial bleed, subsequent bacterial meningitis, then hydrocephalus and a VP shunt installation. This was in October 2018 in France and I was repatriated on Christmas eve, but my first memory of being home is from early February 2019.

 

I fortunately have no memory whatever of anything after laying down in the motorhome although I have strong recollection of the nine previous weeks when we were travelling.  In fact it was a further two weeks in Milton Keynes University Hospital before I could understand what was happening. 

 

I was initially in a dementia ward because of my hallucinations and 'difficult' behaviour, not like me at all, and this didn't help my confused state of mind. My biggest surprise was looking in the mirror and seeing a gaunt stranger staring back.

 

It's been a slow old recovery process and now nearly two years on I still suffer from mental fatigue and mood swings although I have regained some of my physical fitness. I can fully empathise with the comments on this forum about being far from well and references to the hidden disability. 

 

I've found it very helpful to write down the limited memories I have of my ramblings, dreams and hallucinations and to try to make some sense of it but I'll try not to ramble too much here....

It's great to find a forum that is so positive.

 

Keep well everyone in these uncertain times..

[ann_calgary]

Warm welcome to BTG! 

 

I'm so glad you found this site. It is a great resource and is run and full of very supportive people. You have come a long way and many of us can empathize that it is not always easy. I speak for myself that all I can do is take it one day at a time (even one hour a time depends on my stubborn headaches 😄 ) 

 

Take care,

Ann

[Tina]

Hi DigglyDog

 

Also a very warm welcome to BTG.

 

You are definitely in the right place for lots of helpful information and friendly caring support.

As Ann has said, you have come such a long way. You should feel very proud of all that you have achieved , it can be a long and hard road.  Huge respect for how well you have done and we look forward to hearing more from you. 

 

Feel free to join in with the daily Green Room banter. https://web.behindthegray.net/forum/9-the-green-room/ 

 

Wishing you well with your on going recovery.

 

Take care

Tina  

 

[DigglyDog]

Apologies for the inappropriate smileys.....I'm still learning my way around the forum.. 🙂

[ClareM]

Hi welcome to BTG, love your Avatar - Snoopy has always been my favourite  

 

Your story is remarkable and you should be very proud to have come through your ordeal and still be able to post so eloquently and honestly. I lost 2 weeks so can't imagine what losing 2 months must have been like.

 

I still suffer from  mental fatigue, low mood and my memory - well the less said about that the better lol!

 

It's a long recovery so take all the help and support you are offered. I have been lucky that I have been supported well by my family and Neuro-psychologist. Work has been my biggest challenge, I expected to be able to get back to where I was pre bleed but think this was optimistic and unrealistic. With support in decision making I have reduced hours and changed jobs several times in the last 5 years. Now working half the hours I was before the SAH and enjoying the time I have for myself.

 

Rest, relax and write everything down. Don't beat yourself up about not being able to manage as before and yes - you may look well but those who have been where you have understand how far from well you feel. Take good care.

 

Clare xx

 

[Daffodil]

Welcome DD . Glad to hear you are doing well in your recovery and also that you are journalling how you have felt at times. That can be very helpful indeed.

 

Sounds like you got fast help and be sure to post if you have questions.

 

MK is my local hospital and I have been there a few times for Shunt investigations although I remain an outpatient at Queens in London but have found the local team for the most part very responsive and they get better each time. 

 

Go steady

Daff  

[DigglyDog]

Hi DD and thanks for the welcome.

 

I was very lucky with the French health system, prompt action by the A&E guys to get me helicoptered to a specialist hospital and treated immediately saved my life.

 

Sadly because my initial treatment was abroad and all my case notes are in French...I sort of fall down the gap with local specialists, although I have had some support from psychologists in the stroke unit. My main problem is with hearing difficulties as there seems to be conflicting advice about the proximity of magnetic fields, even those generated by standard behind the ear devices, being problematic with magnetically programmeable shunts which I have.

 

For now, I just have a medical alert wristband with all the details of the shunt, and use a single hearing aid away from the shunt location. I suspect that I'm being too careful, but I'd sooner make people laugh with my mishearing stuff than take any chances.

 

Keep well

Diggly

 

[Louise]

Hi there

 

Warm welcome to the site, so glad that you found us.

 

what a journey your been on, thankfully onward and forward now...

 

take care, stay-safe.