I write this post as a thank you, I hope that my story provides some hope for those early on in their recovery, where everything in the world has shifted to a place that is so, so unique/unrecognisable. I know that every experience is different; the illness, type, affects, treatment, care and recovery and I consider myself so very lucky now but it didn't feel that way this time last year.
It is a little over a year since the onset of meningeoencephalitis for me, what a journey!
The path travelled has been the hardest in my life but I am so thankful that the struggles I still have are manageable and if I do not recover any further from here I am so lucky from where I was a year ago.
Tomorrow I return to work, as normal, following the Christmas break whereas last year that was simply not an option (although in my mind I thought it was, having no understanding of the journey ahead). I returned to work 8 weeks after my event and struggled most of last year, in so many ways, a few times feeling my only option was to hand in my notice but I persevered. Now I have learnt strategies to pace myself, rest frequently, to be able to work with the ongoing fatigue.
I am in this position due to ongoing natural recovery and because of the support from my husband, family, urgent care provided by NHS, The Encephalitis Society, my local Occupation Therapist, Brain injury specialist nurse and the patience of my boss and colleagues to whom I am so grateful. I have found so much compassion and willingness to help along the way.
I just wanted to say I am so grateful to everyone that has shared their experience on this forum and provided insight when I have needed it. It has also been really encouraging to read the progress made by others along the way.
There are times when just knowing there are others who understand what you are going through made the journey not quite so lonely or scary.
I have come to a quiet acceptance of how Encephalitis has changed me and this has been such a leap forward in my recovery. I look forward to reigniting my passions and interests going in to this year believing that I can move forward, this is such a different feeling to how I felt during most of the last 12 months where just putting one foot in front of the other was all that was on my mind.
Finally a massive thanks for Baby Donkeys as they have brought a smile and softness each time they appear!
I hope this coming year brings everyone progress, light, joy & many more donkeys! 😉
Written by
GreenBamboo
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I'm so, so pleased to read this. I have been meaning to post my own happy update for many weeks now, and I promise to do so soon. I know my husband will take great strength from what you have written. Aren't we lucky to have the NHS? Wishing you continued strength and a very happy new year xx
Thank you for this post. I’m over 3 years down the line now and like all of us, the journey is tough but that first year I don’t honestly think I realised properly what had happened and how is changed. Now, like you, I’ve learnt to live and even embrace my fatigue, knowing it lasts less time, so relax, let it happen and it clears more quickly. I can honestly say I say thank you every day for how far I’ve come and I know how lucky and blessed I’ve been. Bad times still hit occasionally but I’ve learnt they don’t last long. Thank you for sharing this.
You mention relaxing about the fatigue and that really resonated with me.
I was so lucky to be offered a 5 session fatigue management course which has proved invaluable. I learnt the strategies and found those that worked for me and once I had these I started to believe that I can manage this, and then started to relax.
To be honest I am still a little panicky about the thought of anything out of the norm, a holiday perhaps, but I am just happy to get back to my everyday tasks without feeling like my knuckles are dragging along the floor. It now feels manageable.
I am sure that I still have difficult times ahead but I know they will be for a shorter time and it will pass.
thank you for posting this. So good to hear from you again. Such a wonderful story. It’s posts like this that give all of us hope. I’m 6-7 months behind you and have really started to suffer from fatigue and depression more than before which upsets me as I thought I was making good progress. However, after reading your post (and others) it’s becoming clear I need to implement a more focused fatigue plan.
I haven’t made it back to work and I’m amazed you managed to do so whilst still going through your recovery. Shows what a strong and positive person you are.
So, well done on getting back to work, well done on managing a strict and successful fatigue management regime and very well done on your recovery to date. Long may it last.
Please continue to keep us all posted with your progress together with your individual replies to other people’s posts offering help and support. It is a massive help to those following behind as only other sufferers can truly understand what we are going through.
I don’t have any pictures of baby donkeys but I’m sure one will appear soon😉
I am sorry to hear you are having a tough time with fatigue and depression.
Roughly the same time in my recovery I was struggling, I felt that I had a set back and was really frustrated that my recovery was not going in an upward line. I think it was around this time when I spoke with the Encephalitis Society and it was explained that recovery is not a straight line and that there can be struggles along the way (which is not what you want to hear!). Reading other posts this is a 'normal' thing with Enc.
I learnt to be kind to myself, taking the rest when it was needed and hope that this will pass & things would get better again. I also found short walks when I felt up to it helped.
What a lovely post, thank you for sharing your recovery journey. We are delighted to hear that you are recovering well and you are going back to work, this is such an important milestone!
As you start this new exciting chapter, please do not hesitate to contact us if you need support at: support@encephalitis.info
I cannot say how grateful I am for the conversation I had with a kind gentleman at The Encephalitis Society, I was ready to quit my job and that conversation put me back on a more sensible path and helped me to believe that I would recover and that there was further occupation therapy assistance available if needed.
I never had to call on the assistance but it made all the difference to know it was there!
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