Thursday, 13 August 2015

Getting My Head Around It

"You've got to get your head around this, Jodie."

These are the words of my General Practitioner (GP) as we review my medical status.

I fear the positive effects of a recent iron infusion have been totally undone by the stress of forced household upheaval.

The landlord wanted to lay new flooring (which is very nice) because the previous floor was getting old and worn after 17 years.  Unfortunately, the job needed to be done across two days–one half of the house per day–and it required packing up and moving all of our household effects.

"Just like moving house except we aren't going anywhere!"

Children encapsulate scenarios so beautifully, don't they? 

The whole procedure left me utterly exhausted and unable to do anything for two whole days. On one particular day, I literally could not wake up.  It wasn't a case of choosing to sleep in due to being tired–no! I physically could not open my eyes or move. I was overtaken by sleep until late afternoon.

While it might seem good to get lots of sleep when seriously exhausted, the bad thing is that while I am sleeping so many hours at a time, I am not eating or drinking in that time.  My body gets dehydrated very easily, particularly when overtaxed (my blood concentrations will often go haywire–I believe that is related to Addison's disease, an autoimmune adrenal insufficiency/failure) so it is especially important for me to stay hydrated.  I don't appreciate any worsening of my condition or losing days from my life due to forced slumber!

Thank goodness it is school holidays so everyone can stay home.

It has taken an entire week to be able to get moving and functioning again. It annoys me that the people in charge of these jobs have no appreciation of the repercussions to my health. It doesn't always show on the outside because I work so hard to stay well and, in situations like this, they don't understand how much I am pushing my physical limits to cope.  How can they understand that every day is a quest to prevent a trip to hospital?  They can't (understand) unless they have suffered themselves and I cannot expect others to understand,  but the lack of tolerance and disregard shown by some people can be very distressing.  All they care about is their bottom line to get the job done within a time limit.

So here I am, back at the doctor's office, eyelids heavy with fatigue and knees weak, wondering what all of this has done to my system.  I was feeling so good after that iron infusion and all it took were two  days of unavoidable exertion to knock me back to square one. Sigh.

My friend, Cheryl, in her wisdom suggested that it was probably the infusion that helped me cope with the drama and kept me out of hospital and my GP agrees.

Meanwhile my doctor is reminding me that I "cannot do these things."

"Tell that to my landlord!" I want to say for what it is worth.  I had little choice with this one.  Everything had to be moved within a short time.  I did not move big and heavy things but the stress of organising, directing, planning, being there etc. and lack of rest due to time pressure did a lot of damage. If I had the choice to do it over a longer time period, in a more gentle fashion, I would have.

The doctor continues …  
"A large part of the fatigue is the 'lupusy-scleroderma-thing you've got going on' and you need to rest. You can't keep doing these things and you've just got to get your head around it!"

I know this.  It's other people (like landlords and tradespeople etc.) that put me under undue pressure. It makes it very difficult to exert myself and protect my personal boundaries to maintain my health when other people just don't 'get it' and dismiss my concerns. They look at me and don't see my invisible illness. They don't see the toll of physical exertion.  It is more than 'inconvenience'. It is days and weeks of illness, stronger medications with side effects and worst case scenario: back in hospital.  In this case, the whole episode seems to have set off a flare and left me sick and tired, frustrated, upset, angry and despondent.

As a mother of three, it is very challenging to find enough rest and still do the things that I need to do as a parent and homemaker.  It is challenging for any parent, with or without a chronic illness. I am thankful to have patient children who don't complain when dinner is at 6:00 p.m. one night and 7:30 p.m. the next because I needed a sleep beforehand. Despite good support from family and friends, my mind still boggles as to how to manage everything I need to do and also what I want to do.

It's 'doing my head in' trying to ascertain exactly what my GP meant–get your head around it–a simple statement that could be layered with much meaning.  (What is 'it'?) Obviously, a literal cutting back on activities is necessary but I will be doing it under protest. 

Perhaps I need to get my head around practical issues?  I am already getting help with many things and have worked out efficient ways to manage, even if I hate some of the solutions. Am I expected to give up more of my independence? The children are helpful but their schedules are so changeable that it is difficult to establish routines. Unpredictable chronic illnesses are excellent at throwing any routine or commitment into chaos too.  "Easier said than done" is my current thought.

The doctor's serious attitude is another blow to my wilful disbelief that this is really happening to me. She wouldn't be so serious if she didn't have the evidence and that is disconcerting.  Is she really asking me to get my head around this reality and fully accept it?   

No! No! No! (Can I cover my ears and sing "lalalalalala"?)  
I don't want this to be true.  
I don't want this to be 'as good as it gets'.  
I fear regressing to the days where I was bedridden and housebound. 
I have so much I want to do in life. 
When your own body turns on you, it is the ultimate betrayal. 

I know I have written about acceptance before. Intellectually, I accept my diagnosis.  It makes perfect sense in light of my experience.  I also accept that I need to ask for help with things and I do.  I have had to change my priorities, lifestyle and expectations. I don't ignore my health. I work hard to avoid a 'crash and burn' cycle.

Just because I accept it,
does not mean I have to like it!

I leave my GP's office with orders for new blood tests tomorrow, precisely three weeks since the infusion, and I'm keen to know the results.

Related Posts on Lupey Loops

"Almost There: Affirmation & Acceptance", 29 September 2013:

"Hooks, Needles & Nurses!", 23 July 2015:


  1. I know exactly how you feel, I have Cfs and Fibro. Your Dr is right the accepting is the part that can make a difference. It's been really difficult to accept and to be honest I have days where I do things I shouldn't. I don’t really plan anything anymore. I also find as many workarounds as possible. I have loads of stuff we can do at home. I will do something then rest etc. I also don't expect to be able to do anything on anyday. People don't understand and it is amazing how just thinking can make you so exhausted. I really find a way to cope. I would like to also you are amazing to have achieved everything you have!

    1. I can totally understand why you don't plan anything. In many ways it is easier not to plan than to suffer the disappointment of having to cancel all the time. On the other hand, I like to have my plans for the day to give me purpose and focus otherwise I may not be bothered to even get out of bed, and that is no life.
      People don't understand how it is to be too fatigued to think and that mind work takes energy too. Someone once gave me a scrapbooking set as a gift "to do while you are resting" - they didn't understand that 'rest' and 'scrapbooking' do not go together. When fatigue hits, I cannot even read. I just need to sleep and that's all there is for it. Therefore, writing a simple letter or dealing with household administrative affairs become impossible tasks. I don't trust myself to manage technical things or documents with fatigue so those things get put off until I am feeling well enough - hence a delay in responding to posts this week.
      Thank you for your support and it is nice to see you at Lupey Loops again :-)
      May this reply find you having a good day.

  2. Sometimes (often?) life throws stuff at us that upset the balance. I know you will regain your equilibrium - and I hope, ultimately, the new floor will give you some pleasure in your surroundings. I wish for you some sleep, and water and, or course, crocheting time!

    1. Ha, ha, Mary-Anne. You get it. Lately it has been 'often' but I hope it will become 'sometimes' soon. I've been pretty wiped out this week and slowly coming good and getting in some crochet time at long last. I should have some finished projects to share very soon. ;-)

  3. It is so easy for others to say "take it easy" "rest" "you shouldn't do that" and so on when things have to be done. I tend to overdo it when things need to be done (Prussian conscientiousness?!?!) and suffer for days afterwards.

    I am glad I found people who understand what I am talking about when I suffer from fatigue!

    Take care

    1. Precisely, Anne! There are some things that just NEED to be done and need to be done NOW or in a timely fashion. As a parent, things happen that cannot be ignored. It is so easy to overdo things - I hear you, Anne.
      Sometimes I overdo things because I am close to the end of a task and just want to get it done. If I stop in the middle of it to rest, there is always a very high chance that I may not be able to get back to finish it for hours or maybe days. By then, I forget where I was up to or how I was planning to achieve the goal. Often I will push through, against advice, just to get that unfinished task off the list. I can rest better, with a sense of satisfaction and achievement, than when I have the frustration of half-finished jobs rattling around in my head.

      May we keep the fatigue at bay for as long as possible! Good luck, I know it is easier said than done! Hugs ;-)

  4. It is so hard to bow to limitations, especially when you have already given up so much. What a devastating blow! My thoughts immediately run to how the flooring could have been managed better, for you. We will discuss on our next crafting day. Hugs.

    1. Indeed, Cheryl. I know exactly how it could have been managed better but getting others to come to my party, that's another story! I look forward to another crafting day soon. xx

  5. You must find all this very frustrating. I wish there was something I could suggest you do that would make everything alright but unfortunately I can't. And anyway, what might work for you one day might not work another day. When your doctor says you have to get your head round it, why not ask how exactly they expect you to do that? I suppose it is really all to do with finding a balance between doing what you need to do, what you want to do and what you really can't do.

    1. Hi Gillian, thank you for your thoughtfulness and kindness. You are right about every day being different - that's true for everyone - and it is about balance. I am generally quite good at balancing on my tightrope and I can do that very well if I don't have other people trying to push me off! ;-)

      When improving health allows me to re-introduce activities, the satisfaction makes me a little greedy - it reminds me of my 'former life' and what I used to do and the desire to be able to do those things again is so strong - I just want to do it all again, by myself, for myself.

      Your suggestion about balance is sound. There are some things that try to shift between the "Can Not Do" and "Should Not Do" lists. Perhaps I need to be stricter about permanently putting some "should nots" into the "can nots". Thanks for your wisdom and encouragement, Gillian.