Tuesday 31 March 2009

I'm no Superman

I make no pretence about this post being anything other than an angry, frustrated roll-call of things i can't currently cope with. The list is extensive- I am not coping well.
Having had over 3 weeks of IVs now, and my needle in for 4, I am still having temperatures, coughing fits, bouts of entirely consuming exhaustion and terrible moods (no, it is not PMS- i class my emotions as a symptom of my current state of health).
I spent everyday last week at hospital, and simply don't feel i'm being allowed the rest my body is so desperately craving. Having said that, it's my lungs which need the rest, and i can't think of a relaxation treatment which would alleviate the complaints they currently have. I'm simply not doing well at living.
Yesterday, i had to take my car to the garage for a much needed repair- but it turned into a lengthy saga which drained me. Getting to a garage half an hour away is an issue in itself for me at the moment, as my lungs are in a permanent strop and can only be described as feeling like i have a vice slowly tightening around them as i keep my arms raised to drive. Add to this the fact i had to be there at 8.30am, immediately after my morning dose of IVs, i struggled. Being told i needed to fill the courtesy car with petrol in order to get home may have seemed to the Service Adviser a reasonable request, but i have to plan when i need to fill the car with petrol as squeezing the handle and holding something heavy at waist height takes its toll on my body.
I had to return for the car at 4pm, and felt pathetic and absurd as i arrived fighting back tears and wanting someone to look after me- i was only picking up a car! As I waited elsewhere for new tyres to be fitted i pondered how i had come to be in this state, and when I had become this pathetic. If someone else had told me this story i would suggest they get some real problems in their life. But until you feel how arduous and energy sapping the tiniest of everyday activites are, you can't understand why everything becomes such a big issue, and requires such a degree of forward planning. The 'Spoon theory' is becoming ever more relevant- yes as unattainable as ever. I don't feel i have the option to bank up my energy and choose when to use it, as i simply don't have the required support networks in place. I have a loving and wonderful partner, but he is not my carer, nor do i ever want him to take that role. I am forever being told i ought to ask for help more, and that if i don't ask then i wont get; but days like yesterday when i look round for someone to beg i realise no-one is there.
I struggle to stand in the queue at the Post Office because i begin to get breathless and start to ache and shiver. I'm finding the disabled spaces aren't 'disabled enough' and still prove to be a battle to walk from and to. The provisions for twenty one year olds with such problems simply aren't there; and a grey wig, bottle of talcum powder and a doddery husband in tow would open doors i simply can't push hard enough.
Today is a bad day, and tomorrow will be better. There are so many people who have it far harder, with just as little help; but few I imagine appreciate the value of life more than I do. I dearly love my life and most of what it entails, which is why I find the situation so frustrating. It is so important to me to live it, whatever that might involve, and having obstacles put in the way makes my 100m tortoise crawl harder than I already find it.
I'm not sure what i'm expecting from this post- someone to brandish a magic wand perhaps? Or maybe just some acceptance within myself that i'm not Wonder Woman.

2 comments:

Tinypoppet said...

hey sweetheart.

Huge hugs :( it's a horrible stage this bit, as you don't have a nice defining label to make people run and force you to sit down.

Spoon theory is actually very useful, have you tried sitting down with your daily regime and applying spoons to it properly? As in, getting out of bed = 1 spoon. Physio = 3 spoons....etc. Then divide up your list into "have to do myself" "could get others to help with" and "could stop doing all together".

That way (hopefully) you can plan your days a bit more solidly to help you try and reserve some spoons.

This is all a bit waffley to do on here so I will chat to you on msn about it but essentially you HAVE to stop doing some things and start accepting some help for others, because as you highlight so eloquently, there are some tasks which will spring up where there is no help available. Therefore taking help when it's there (even if you don't need it) becomes a v handy trick indeed.

Notice how I'm still waffling when I said I'd shut up ;)

Chat to you soon sweetheart. Whinging is what blogs are for. xxxx

dinkydad said...

huge hugs batman, miss you and love you.xx