The truth of the ‘not so good’ days

… Pilates – it has literally saved me.  But I’m sure you’ve heard that before from me.  So, below, I’m going to share with you that despite all my best efforts, from time to time, my HSD does manage to catch up with me, I am human after all.

Being hypermobile myself with Hypermobility Spectrum Disorder – HSD, I have to work hard at keeping the condition under control to the best I can.  After all, I’d rather it didn’t control me and I can enjoy life to the full.  The biggest underpinning success in managing my condition is Pilates – it has literally saved me.  But I’m sure you’ve heard that before from me.  So, below, I’m going to share with you that despite all my best efforts, from time to time, my HSD does manage to catch up with me, I am human after all.

 

Chronic fatigue is extremely common with EDS/HSD, those muscles have to work so much harder to keep us upright and moving. 

Chronic fatigue is extremely common with EDS/HSD, those muscles have to work so much harder to keep us upright and moving.  For me, my HSD fatigue means that I literally collapse to the floor in an extreme energy crash.  I have absolutely nothing left in me to move my muscles for quite some time (anything from 20 minutes to many hours). I simply lay flat out on the floor, awaiting for energy to return… a bit like waiting for a car to recharge! 

 

I do tend to get some warning that my fatigue is running close behind my heels, so for the majority of the time, I can get home in time for when it finally hits.  I’ll recuperate at home and the next time I emerge, to others around me, they will be unaware of the struggle that I have just had.  (the invisible nature of EDS/HSD is what I talk about here in another post).  However, unfortunately I have been caught out on the few odd occasions outside of the home.

 

And this is exactly what happened this week!  Earlier this week, my morning started well.  I went to work early and ran two of my Pilates Reformer classes (I love helping others with Pilates).  All was good, I was fine, we were having a giggle in the class, my clients left feeling refreshed and had an enjoyable session.  Not too long after, I set off to the hospital for a routine appointment.  Upon my arrival at the hospital, my HSD finally caught up with me and my extreme fatigue set in fast!

My collapse begins with me having to be seated, but it quickly progresses to a final ‘flat on my back on the floor’ position – at this point I have no energy left within my muscles at all.  So you can imagine that this changed to being from a routine appointment to an extended appointment with the A&E team.

 

Nearly 4 hours later and I’m still not able to walk, sit or move from my position of lying down full-length on the bed.  The best place for me was to continue resting at home…except one slight problem!

tanya_ambulance_delivery_square_caption_still_smilingNearly 4 hours later and I’m still not able to walk, sit or move from my position of lying down full-length on the bed.   The best place for me was to continue resting at home…except one slight problem! I cannot sit upright, so no car lift for me.  So, stretchered home I was, via an ambulance.  There’s nothing better than a picture to explain, they say its worth a thousand words.  So, here is a picture of me being delivered home, by the amazing local ambulance team.

 

Finally, after over 6 hours since the fatigue began its descent, I managed to be able to find energy to be able to sit on the sofa.  I’ve been taking it easy for the past few days, with lots of film watching and I’m now back on track again.

 

With Pilates, I have a much stronger body and thankfully this extreme tiredness is no longer a common occurrence.  I’ll keep remembering what a lucky lady I am and continue to help others in their Pilates journey to manage their condition too.

 

Have a lovely rest of weekend all

Tanya x

 

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