Sunday, 22 March 2015

Pacing in the 'real world'?

The last two weeks have been extremely busy with unforeseen circumstances bringing huge challenges. My health hasn't been so great and life hasn't so much thrown a spanner in the works, it's more like life has chucked the whole toolbox in for good measure.

The result? I am beyond exhausted!  I'm in pain, I'm hypersensitive to everything, I'm bad tempered and generally not my usual perky self.  It's times like this that I remember the all the gems of advice about pacing.

  • If you are in pain then you've done too much and you should have stopped already.

  • Do something for 5 minutes and take a break, then come back to it.  

  • Delegate.  Ask friends and family to do it for you.

I've always found it difficult implementing that advice.  I understand what it means but my life always seems to have other plans.

My son has mild asthma.  It doesn't usually bother him unless he has a cold or hayfever.  On Tuesday he started coughing.  He was coughing so much he couldn't actually stop coughing.  We gave him his inhalers but they didn't make any difference.  I tried to call the doctors but despite telling them my 9 year old son was struggling to breathe the first available appointment wasn't until half past three in the afternoon.  My PA was with me so she took us up to A&E.

The hospital staff were reluctant to treat my son because his only symptom was a cough.  Oxygen sats were normal, he had no wheeze and his chest was clear.  They gave him a nebuliser anyway and he made a miraculous recovery.

Wednesday morning and my son was coughing non-stop again.  His inhalers didn't help so I telephoned NHS 111 who called an ambulance.  The crew decided to take him in for treatment but I had no PA with me so I had to go on the ambulance with him, and that meant leaving my mobility scooter at home and walking with my crutches.

I can't walk very far, it's exhausting, painful and leaves me feeling weak and dizzy.  I should have paced, I should have used a wheelchair, but I had no option.  I couldn't sit down at the nurses station while I stood in pain for 10 minutes while my son was booked in because there were no chairs.  I had to walk around to the childrens examination rooms because there were no wheelchairs.  I was in pain and broken but I had to stay alert, communicate clearly with the medical staff and most importantly care for my son who was tired, upset and in pain.

My son was given a nebuliser and we waited 90 minutes to see a doctor who declared he had a cough (no shit Sherlock!) and he told me to give him cough medicine.  My son was still coughing a lot, he couldn't speak more than two words without coughing.  None of my friends or family were available to give me a lift home from the hospital so I had to stand and wait outside for a taxi to take us home.  I leaned against the wall so I didn't fall over.  POTS makes it very difficult to stand still in one place but there was nowhere to sit and I was too exhausted to pace up and down.

I was running on adrenaline, which is never a good thing.  It always catches up with me and makes me pay back with added interest.  We got some lunch but my son was still coughing non-stop.  I telephoned the Asthma UK helpline who were very concerned by his coughing.  They advised me to phone another ambulance and take my son back to hospital and request that he be put on steroids because he was at risk of having an asthma attack.

I knew I should have been resting but there was no-one else to help out.  My husband was at work 30 miles away, my PA arrived just before the ambulance but I needed her to be at home for when my other two children got home from school.  I spent another three hours at the hospital and my PA brought us home with the reluctantly prescribed steroids and the advice to put my son on antihistamines.

Thursday came around and my son was still very poorly.  I phoned the Asthma UK helpline again and the nurse advised us to see our GP because my son needed a peak flow meter, antihistamines and possibly more steroids.  I managed to get an appointment at 5:30 that evening.  I was eventually seen at 6:10.  The GP claimed the asthma nurse was just 'reading off a screen' and he prescribed cough medicine.

Friday should have been a day of resting but the primary school had planned a training day so I had my two youngest children at home with me.  Thankfully the medicines were helping my son and his cough was much improved, even though he was still feeling quite poorly.  I had a visit from my sister and nephew, which was nice but even that left me feeling weak and drained.

Now it's the weekend and I'm running on empty, but I still have my regular chores to do.  The laundry doesn't do itself and if it's not done by Monday my cleaner and PA can't sort, iron and put it away, that means no clean school shirts or work shirts.  The family still need to be fed, shopping lists need to be made, school dinner moneys need to be paid into the poorly designed Squid website, PE kits need to hunted out, shoes need to be cleaned etc. etc. etc.

I am a complete failure at pacing but I'm not sure how I could have paced the week I had.  You can't take a break from waiting in a hospital cubicle with a boy who can't stop coughing.  You can't stop and sit down when there are no chairs in the immediate area.  You can't delegate when you're on your own with no-one to help you.  You can't always rely on family and friends because they have work and personal commitments, and social services can't afford to give me full time support.

The past week has been a little more extreme than most weeks, but it's not a rare occurrence for me to be pushed beyond my limits.  This coming week I have to travel to London to be see by Prof Hanna at the Channelopathy clinic at the National Hospital for Neurology and Neurosurgery, the week after I have a dentist appointment and an ENT appointment in Sheffield, then the children break up from school on Good Friday and they are off for the next two weeks.  I love them to bits but they have the uncanny ability to kick off as soon as I try and grab a quiet five minutes to myself.

So pacing... yeah, it would be great if I actually had the support to do it but in reality it just isn't going to happen!

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