My Fatigue is empowering my children: a silver lining


So, all through the trials of having a chronic illness, I think it is really important (sometime REALLY hard) to look for the silver linings.. some are so small they are almost hidden, but some are bigger..

My recent flare up has shown me what an amazing community  I have (and people say London isn’t friendly!!) I have had many offers of playdates, other mums have stepped in at the last minute to take my kids to school when i couldn’t or when i had an appointment. I used to hate asking for help, actually i still do – it goes against every bone in my body… but, do you know what? It is great for everyone – friends want to help, they like to feel they are doing something to make your life easier.. AND you get a warm glow from feeling supported… I am working on being more honest with people and avoiding the easy ‘fine’ to the ‘how are you?’ question.. how people take the answer is really interesting!

Anyway, (me waffle? never) back to the silver lining of the title. My kids.. Firstly i am lucky they are old enough (6 and 8), but me being able to do less has meant that they have had to do more. Really simple tasks that i would have thought just easier to do myself, I have had to hand over to them. Tasks that I would have just snuck in on the way to doing something else are being done by my little work force (!). Don’t get me wrong, it is not all plane sailing, but I think on some level they realise they can’t push me right now and they really are helping.

They can now shower themselves independently, brush their teeth (although I’m sure the mummy police could pick holes(!) in their technique), and get their PJs on with no help from me. (maybe the odd prompt shouted from my room, like i said not all plane sailing!). I lie in bed while they get on with it, and then they join me for stories in my bed. I actually look forward to bedtime now. I used to dread it, hoping that i had enough energy to see it through without screaming my head off, often having to walk around with my head down because I was so dizzy and out of breath… I can’t believe i counted this as normal. (duh)

My other go to silver lining is a slightly more dodgy one – my weight… I have always had to work quite hard to keep my weight down.. until I got sick four years ago.. since then, when my MCAD flares up, I lose weight…fast. My body stops absorbing food properly and off it falls. I love being thinner… but it is a dangerous game to play – I’ll dedicate a full blog to it at some stage..

#ehlerdanlossyndrome #eds #posturalorthostatictachycardiasyndrome #POTS #mastcellactivationdisorder #mastcellactivationsyndrome #mcad #mcas #chronicfatigue #mumwithfatigue #chronicallyill #invisibleillness #spoonie #zebra #chronicallyillparenting #silverlinings



Pacing bla bla bla

Pacing makes mountains climbable… but its so BORING!!

I am programmed to be a passionate person who puts 110% into everything I do. I am smiley and over enthusiastic in everything I do!! (Illustrated here by excessive use of exclamation marks).

Sadly these attributes are not massively helpful when lack of energy/spoons (if you havent heard about the spoonie revolution google it-it helps make sense of energy issues with chronic illness).

I know that I have to be careful about how much I do. When I am sick or flared up I have no choice, my body puts its foot down, the world starts to spin/fade to grey and I have to lie down when my limit is reached. (Currently this is where I am. Mid rest, horizontal at 2.45pm).

The problem arises ironically when I am well. I am reassured when I butt up against my evil symptoms. It sounds weird, but I will often do AS MUCH AS I CAN and the symptoms I get (which I usually ignore) reinforce the all important diagnoses for my paranoid inner psyche to digest and ruminate over. Before I got flared up this time, I realised I was pushing through to that gritty place (you know where you have to muster every ounce of energy and will power) just to get through every day. Not good. You have to get on with things when you feel unwell when you have a chronic illness, I took that to mean ignore them… I need to find the middle ground. I’m rubbish at middle ground. Pacing-being measured and disciplined in what I choose to do and how I do it goes against my natural inclinations, but it is something I need to master to get the most out of my life.

I think I need to believe in my diagnoses to the point where I don’t push myself everyday. This all comes down to accepting me as I am now, not what I wanted me to be now/what I thought I would be now, but me with my illnesses. But also trusting myself-no I am not making a big deal out of nothing, no it’s not going to go away, I know what I am doing more than anyone-i can’t look for look for validation from anywhere (I won’t find it). Trust that I know your own body and what it needs and listen to it.

‘listen to your body when it whispers, then it won’t need to shout’


#ehlerdanlossyndrome #eds #posturalorthostatictachycardiasyndrome #POTS #mastcellactivationdisorder #mastcellactivationsyndrome #mcad #mcas #chronicfatigue #mumwithfatigue #chronicallyill #invisibleillness #spoonie #zebra #chronicallyillparenting