This last week has been busy yet again. I've had appointments with familiar and not so familiar specialists, I've been to non-medical appointments, I've had 2 sessions of OT & Physio, I've met with some people at home & I've had my lovely cousin from QLD visit which is always amazing to see him. It's also been Father's Day to celebrate my amazing dad. I love him to the moon and back!
It's been a busy week, and here it is about to go again. Except instead of starting the week hopeful and ready to go, I'm tired. I'm so bloody tired.
Everyone is tired.
People go out and party - they get tired.
People go to work full time - they get tired.
People who work shift work -they get tired.
People who are athletes - they get tired.
People who are studying or at school - they are tired.
People who run a family - they are tired.
And me. I am always tired.
If you look at my daily life habits it probably seems beyond incomprehensible how somebody who has no strict or gruelling timetable can be tired or even comparably as tired as the other person, but that is so wrong in my case.
If I have a quick glimpse at the biggest daily happening for me they would include; waking up & showering, dressing and getting up for the day, going by transport to an appointment of some sort, returning home and organising lunch, doing a short time of exercises, leisure time and then finishing the day with dinner & nightly routine in getting ready for bed. At all of these daily activities & routines I have either a family member or nurse with me to help when needed. So this tiredness sounds both pathetic and unjustified right?!
I agree on paper it sounds pretty ridiculous. Saturday for example, I awoke at 8.30 and got ready for the day with my nurses then we had a really nice enjoyable family brunch and....I was out like a light asleep from about 12.30-3pm. I could've slept a lot longer but had something to do so forced myself to wake up (Ok, maybe my mum forced me to wake up. Big deal!). This was an especially fatigue filled day with no real reason. Well, No 'normal' reason that is.
My reason for being exhausted and fatigued everyday of my life is something unseen by the wider community and is simply a symptom of my health conditions. Fatigue and exhaustion are an invisible aspect of my invisible chronic illness and many other illnesses too. In my instance I'm referring to my fatigue being a direct result of my arch nemesis, Dysautonomia.
I can understand people looking at my life and being unable to understand just why I'm so tired and that's why I thought I'd try and explain one the most debilitating aspects of my conditions.
You know when you're having a conversation with someone about the busy week you've just had and you say to them that you're just so tired. The most common response to that in human nature is to reply in a similar fashion saying I know I'm tired too. And yes, both people can be tired, that's the honest truth. But when you compare the tiredness of someone who is seemingly healthy and fit to someone with POTS, their tiredness are on completely different levels.
If I was asked to describe my feelings of tiredness, I don't think could. The terms that seem to best fit with my feelings of tiredness are exhausted, drained and wiped out. Before getting sick I was a tired person too, thanks to college, late night chats, a few to many hangovers and the Uni life. But if I'd had felt this tiredness I'm in now, I don't think my normal tiredness would've been worth mentioning. Going from what I call 'normal' tired to POTS tired has been quite a significant change. I used to feel tired and then wanting sleep- having sleep and feeling a bit better but now the tired I feel is unrelenting and unforgiving. I have a sleep and wake up tired so then I have a rest...and fall asleep again. I'll then do something like physio or OT and be exhausted afterwards aswell. The worst is when I have friends over to visit and no matter how happy or how much I'm enjoying myself I sometimes crash and burn like it's the end of the world. The reason behind this though is not just me being a bit of a cop-out or lazy, it's actually part of the physiological changes that occur as part of the POTS & Dysautonomia trifecta.
At first I didn't know why I felt so differently tired than before and so reading more after I had my diagnosis it started to make sense. I got reading some medical journal articles and one of the bigger doctors in the autonomic community, Dr Grubb, put it very accurately in saying :
"Patients may be severely limited as activities such as housework, bathing, and even meals may exacerbate symptoms. Recent studies have shown that many patients with POTS may suffer the same degree of functional impairment as patients with chronic obstructive pulmonary disease or congestive heart failure..."
(from: http://www.medscape.com/viewarticle/522421 )
When I first read this I must say I actually couldn't even sit up or even turn my head at this point. These are still major issues for me now but I'm hopeful that I will improve as time goes on. Doing activities such as housework and personal care did not make me 'this' kind of fatigued prior to illness, infact there was barely a thought process in doing those tasks as they were just another part of living. But lying in my hospital bed it was made clear as the thought of doing any large movements was exhausting in itself. I was just existing. I was upset, scared and felt overwhelmed by this new diagnosis but in another way I was relieved. Sounds stupid right!?
Yes, but no. As I was feeling so tired and sleeping away a good 18hrs+ of each day I was relieved when I found out that this type of fatigue I'm experiencing was linked to my illness. I worried
because I am not a lazy person and I would give everything to be back to my old self but I feared people who lacked the understanding of my condition or knowing my fighting spirit prior to this would judge me. And you know what...I'm certain a few ignorant people have, so good riddance to them. Meanwhile my truest friends have stuck around and I can't thank them all enough.
The article talks about comparing the functional impairments of someone with POTS/Dysautonomia to COPD or heart failure. Crazy and scary! I've never been exposed to chronic obstructive pulmonary disease but I have done some research on it as part of an OT assignment at Uni. It sounds horrifically debilitating and unkind. To think that this level of exhaustion and fatigue are experienced daily by those affected with COPD and heart failure is saddening. Yes I'm tired and exhausted 24/7 but I do have better days and some worse, so I am thankful for that. Over the years I have most definitely experienced severe functional impairment but all I can compare me experiences too is how I've felt at my previous levels of function.
So I meant to post this earlier but I was too depleted to get my thoughts organised and post this up. Today I awoke just as tired as yesterday, although I must attribute some of that to my sleepless night because I had a bug in my room on my wall and I legitimately cannot cope with creepy crawlers. Eeek! Today is a hospital free day for me & my only one for this week so I'm enjoying just being at home around my sisters & Missy dog. The downfall of being so tired all the time is when you slip into that delirious and no sense state . It's embarrassing, especially like today when we had a visitor over I started off on this tangent about hotel waiters and ester day told my sister that the car keys were in the toaster. Oh my!!
The last few days have been extremely exhausting for no particular reason other than my completely dysfunctional body. I'm certain this too will pass and I'll be back to my usual sleepy state and have a much better ability to function & be coherent.
Today I might do some more research on ways to reduce fatigue and exhaustion as I could most definitely use some extra tips. Do you know any tips to help??
For now, sweet dreams & don't let the bed bugs bite!!!
xoxo
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