I seem to be going through a tough period at the moment. Been feeling fatigued, depressed and generally unwell over the last week. All very frustrating as I feel as if I’ve gone backwards 3 months in my recovery (I’m 7 months out). Looking back over the last few weeks I guess it’s been quite a draining time - although it didn’t necessarily feel like it at the time.
Firstly, I had my 6 month MRI follow up (still awaiting results). This is a procedure I don’t like and it also means I need to go back to the hospital where I spent 5 unforgettable horrible weeks being diagnosed and treated for HSV Enc.
Secondly, I visited the dentist just before Christmas for a molar extraction (first in many, many years) and a filling. I was in the chair for about 1 1/2 hours trying to stay calm. A bit of an ordeal but I just wanted to get it over with as I had been putting off treatment for some time.
Thirdly, I’ve just spent the last few days over Christmas trying to appear as normal as possible in front of my family to ensure I didn’t spoil anything for anyone.
So I’m thinking these are the reasons. Just thought I’d post this to get other peoples views, thoughts and a bit of support.
Thanks in advance.
Remos
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Remos
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Hey, Remos. Your winter is sounding similar to mine last year, complete with torturous MRIs and dentist appointments and stressful family interactions. For me, I noticed around my 6-month mark, after I regained a lot of basic physical functions, I really wanted to be (act) normal. I pushed too hard too soon and felt myself slide back. I became more volatile and depressed, and my symptoms worsened. In retrospect, my poor brain was just trying to get my attention and ask me to slow down. It took several months for me to notice and accept that. Now, it takes me less time to notice that I need to be alone and rest intentionally… but I still fight the urge to do more. My brother has given me good advice in managing my recovery. One bit he shared was: “Function at 50% of your capacity at all times. Just because you know you can do more doesn’t mean you should.” Obviously, there are times when we have to do more (e.g., appointments, family events), but I try to rest in advance. I’ve also had to manage (my own perceptions of) other people’s expectations of me and communicate my needs and preferences. I’m still working on that, though—I had a major setback on Christmas Day, complete with mice, frozen peas, and hitting my head/face on the microwave door.
I hope you have some peaceful rest, and remember there are people who understand what you’re experiencing. Happy New Year.
Thanks for this kit. Your words and advice are appreciated. Seems like we’ve both had similar experiences. I’ll try and work on implementing your 50% rule over the next few days. Thank you for helping me.
I’m glad you found it helpful! Yes, most of us with E have had similar experiences… What a horrible thing to have in common, but it’s nice not to feel so alone.
Hi Remos, it's a difficult time - hard to appear chirpy when you are beaten down by events and situations that are outside your control. As Kit says, take it easy and don't use up all your reserves, 50% sounds nice. My wife and I can walk around the block of an evening if I take pain relief for my spine. We extended it bit by bit until I came down with a throat infection and then a urine infection - out of action for several weeks. Now I'm back to square one! Ha ha but square one isn't so bad. I'll try for square two in a couple of days. Best Wishes, G2
Hi all. So agree with all this. Anything that stresses me sets me back but over 3 years since HSV, each setback is less severe and knocks me back less. Like Kitnkaboodle says, I’m learning to never go to the extent of what I think I can do. Also to rest as much as I can before stressful stuff and make sure I eat properly as well. I still had a mini meltdown Christmas Day but I managed to cook for the first time in 4 years. So proud. And my husband forgave me for snapping at him. Thanks guys because its so so comforting hearing how we all share our struggles.
I agree that rebounding after setbacks gets faster and easier, relatively speaking. Something used to get me off track for weeks, but now it’s usually days.
And eating scheduled, nutritious meals helps me as well, especially in warding off migraines and excessive pain.
7 months on in your recovery and it sounds like you are doing incredible! I am 4 years into it and one thing I wish I knew at the start was that recovery is not linear, it's like waves with ups and downs and that's okay! Thank you for sharing your story and thoughts with us so courageously and you are definitely helping others including myself in sharing what many of us are feeling right now or have felt in the past.
I am definitely feeling down after the festive period. It can be draining for those with chronic illnesses and brain injuries and I know I had to ensure I made time to rest.
It's not easy returning to places associated with distressing memories. I experience the same when I return to the hospital for checkups, scans, etc. I like to bring someone with me such as a family member or a friend and I arrange for something to look forward to after such as my favorite chocolate bar or a good movie! That way I can try to focus on that rather than the appointment I'm dreading!
I find connecting with others really helps me and lifts my spirits. I join the encephalitis societies zoom gatherings and would highly recommend - encephalitis.info/blog/virt...
I contacted the encephalitis society when I was diagnosed with encephalitis and I found them really helpful - encephalitis.info/support
Thank you for your reply and kind words of encouragement. This is just what I need at the moment. I’m still finding my way through all the depression, anxiety and fatigue. I always seem to think I’m further on than I really am - especially with the fatigue side of things recently. Had a long train journey to London and back yesterday to see Neurologist. This was the first long journey I’ve had since before I was diagnosed. Really feeling the effects of it today. Probably need to be more cautious and lower my expectations for now. Thanks for the info on the zoom meetings. I’ll give it some thought.
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