I decided to publish this blog about post stroke fatigue because even though I am four years’ post stroke, I still get that feeling, quite unexpectedly, that I have been hit by a very fast freight train! For those who do not fully understand the fatigue suffered by stroke survivors, it is not like “Oh, I must close my eyes for a few minutes as I feel tired,” sort of feeling but it is an all-consuming fatigue that takes over your body and mind. Your limbs ache and throb, your migraine starts and you just cannot function and need quiet and rest. This fatigue can last for hours, days and sometimes weeks, dependent upon the person and their fatigue. To fully understand this fatigue, please watch this video prepared by the Stroke Foundation as it helps put things into perspective. Many of my close friends and family did not fully understand the fatigue I suffer until they watched this video.
As most of you know, I no longer ‘work’, as in paid employment but I am involved in a number of projects. Over recent weeks, I have been busy organising a Pop-up Book Shop, marketing my book A Stroke of Poetry, sending email information for my Stroke Safe Ambassador presentations, and conducting the presentations. I’ve been interviewed for articles in local magazines, Sunshine Coast Daily and taken part in a local radio interview. Also, as Vice President of the Vintage Calendar Girls Inc., I have been working hard helping with the administration, strategic planning, photo shoots and recently flew to Sydney with the VCG team to photograph Kochie, the Sunrise presenter, with our two lovely VCG ladies. Wow! I think I’m tired reading that! I tried to keep up with my running schedule but sadly, that fell by the wayside as I could feel my fatigue creeping in!
Two weeks ago, that all familiar freight train decided to stop at my station and linger a little too long for my liking, so I made the decision to cancel some arrangements and take a few days rest and now, seem to have bounced back. My husband, David, commented that a couple of years ago, I could only keep going at a moderate pace for 3 to 4 days before I crashed, and it would take a week at least to get me back on my feet. When you put it into perspective, then clearly my fatigue is improving, it’s just perhaps poor management on my behalf.
Many stroke survivors ask me how to manage fatigue and will it ever leave me? Having read this blog, I don’t think I am the best role model and believe it is something I have to live with and limit the number of projects I become involved with. As someone who likes to be on the go constantly, this is very hard for me and learning to say ‘No’ I find difficult. As David succinctly put it…”We need you too so please take care of yourself” and self-management is utterly important to avoid crashing and having to rest for days after. I take the view “It is what it is” and although it provides such limitations, it is here to stay.
For further advice from the Stroke Foundation, hop onto Enableme, as they have a host of amazing tips, blogs from other stroke survivors and some podcast information.
Please let me know what your advice is and how you manage your own fatigue and maybe I can share it around. Perhaps I can learn a few things myself. So, if you see me in an exhausted heap, just give me a hug, buy me a coffee and that will be the start to feeling better.
As always, stay healthy and happy.
Much love
Shelagh
