I've got yet another chest infection, I feel really rough and no doubt, thanks to my asthma, a prescription for a course of steroids will be on the cards by Monday. It took all my human strength to get Daisy to her respite at the Children's Trust on Friday. Respite that had been booked initially because I was supposed to be running an overnight Enduro race on Wimbledon common, when an ongoing achilles issue scuppered those plans we then planned to visit friends in Cambridge and have a weekend away, when chemo scheduling scuppered those plans I arranged post birthday drinks with some of my friends - and now this lurgy has scuppered those plans.
If I worked full time I would have been signed off sick, but when you are a carer and people rely on you to make sure you have meds or food or to speak to doctors on their behalf then you cannot be sick. It just all became too much yesterday as I felt so poorly and fed up about our situation. Fortunately we are all made of pretty strong stuff in our little family and they all rallied around showing through actions (and not necessarily through words) that they do care and appreciate what I do.
Words came this morning however in this lovely post my husband put on facebook, it sums it all up really.
It's carers week and it's great to see a campaign to highlight the huge need to look after those doing the caring for people with illness and disability.
This weekend hasn't been the happiest as the one person holding our shit together gets sick and things start to get difficult. That accumulated stress and pressure on carers affects not just us but shared by hundreds of thousands of people in this country doing the same. It's a mostly thankless task as they are expected to look after people under the most trying circumstances.
It's the long term day in day out constant tasks both physical and mental to keep moving forward, each person finds their strength to deal with it in their own way. And to make the best of each day without faltering as you have the life of someone in your hands is something quite amazing.
I have it easy to be honest in comparison to what Stephanie Nimmo goes through, all I'm dealing with is my road to wellness and I can control how I am in this, but when your essential support cant function you realise how wrapped in your own world you can be and not see the needs of others.
Both Daisy, Jules, Theo Xanthe and I have the most amazing carer in Steph, and not trying to be dramatic but I would not be here without her.
She is a superwoman but the virus, stress and pressure can be kryptonite to her, and the remedy is rest and getting away from it, not easy in our situation.
It may be simplistic but messages of support, coming over for a cup of tea and just being there for someone in this situation can help. Carers can feel isolated as it can badly affect normal social relations.
Going out is a rare luxury but it needs friends to drive it.
To my amazing wife and best friend ...On and up. X
Normal service will resume in a few days, after all if Dave Grohl can pick himself up and carrying on playing after breaking a leg on stage I can pick myself up and get going with our Glastonbury preparations - nothing is going to scupper those plans!
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
special needs (86) costello syndrome (46) disability (34) Great Ormond Street (21) aspergers (19) TPN (18) cancer (18) carers (16) parenting (14) autism (10) shooting star chase (9) children's hospice (8) Blogging (6) family (6) SEN (5) hospice (5) Mitrofanoff (4) diagnosis (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) communication (3) holiday (3) benefit cuts (2) david cameron (2) gastroenterology (2) singing hands (2) travel insurance (2) BSL (1) Child Hospice (1) Colectomy (1) antibiotics (1) benefit scrounger (1) bladder (1) france (1) health (1) line infection (1) makaton (1) portage (1) siblings (1) sign language (1) sign supported english (1) ultrasound (1)