It's been just over two months since my last health update. In that time, a LOT has happened! Regarding myself, I am still waiting on a PIP assessment which I was advised can take up to 16 weeks. No rush there from me, I am expecting to be turned down and have to appeal anyway, as seems standard procedure, however at least I am on the waiting list now.
Wheelchair referral was a bit of a mess. My GP's secretary couldn't fax my application forms through (after already being delayed by a fortnight due to them not knowing how to fill in the forms) as the fax machine was broken. Once it was fixed, they forgot to send them. Apparently the copy sent off in the mail on the same day got lost. Hmm. So, it took a month of waiting to find out they were missing and had to be done and sent off again, which wasn't ideal but there you go. Again, a waiting time of around 16 weeks for a wheelchair assessment but still happy to actually be on the waiting list for that, too.
When you have a chronic illness, one of the most frustrating things is feeling like you're not in control of your own life anymore. You end up feeling like you spend an eternity just *waiting* for things to happen. Waiting for appointments, waiting because of delays at appointments, waiting for reschedules because of cancelled appointments, waiting for referrals, forms, interviews, prescriptions, opinions, help... even for the most positive of us it gets HARD.
On the subject of waiting; one of the reasons I've been delayed in writing this post is my dear husband Ray (who has chronic Lymphoedema of the lower right leg) was rushed into hospital mid April. We were warned on the day of his diagnosis that he was more susceptible to infection, specifically Cellulitis in the affected leg but we never really thought it would be that much of an issue... we were so wrong.
The attack came on fast, Sunday morning Ray was hit by a crippling toothache and by midday he was shivering, grey and barely able to function. We thought it was a stomach bug or 'flu so I tucked him up into bed and he tried to sleep it off. Monday morning came and after dragging himself to the toilet, I saw his leg for the first time since Sunday. It was huge and purple red. Burning hot and just horrific really. My dad suffers with cellulitis so I thought I'd know what to expect, this was like nothing we had ever experienced before. After being told to get to a&e Ray was given a huge dose of IV antibiotics and then sent home around 11pm to return the next day for another big dose of IV and the same again on the Wednesday. Over Tuesday the leg continued to swell and darken in colour, it was still boiling and you could see the throbbing of the blood pumping through his skin. His heel and toes were turning green and black, he was 'forgetting' to breathe in and was sick. It was the scariest time I've experienced as his wife. Wednesday he was admitted into a ward as the doctor administering his last dose could clearly see no improvement was being made. Ray stayed in hospital for a week with a special IV antibiotic made up for him as the usual treatments were refusing to work. He had regular stomach injections alongside the 4 IVs and was in a pretty depressed state. Everyone around him was frail and elderly, he couldn't leave the ward or for the most part, his bed. I found it difficult visiting with no car, the children to look after and getting around on crutches (thank goodness for my parents and Ray's parents).
To cut a long story semi-short, it was terrifying and sobering. We have to deal with the consequences of this infection and if he has a repeat attack within a year, due to the severity and complications he will have to take a low level antibiotic every day for the rest of his life. The day Ray arrived back from hospital, Sullivan, 3, contracted Chicken Pox, low and behold a fortnight after that Thom, 12, also contracted Chicken Pox. His was a severe case and that was another 4 weeks of really difficult times with those two. Honestly it felt like we were never going to get off of the rollercoaster of horrid things happening.
So, these past two months have been full of craziness really. What with the both of us trying to hold down jobs and school for the children at the same time, it's been manic to say the least... but I feel better now I've updated the health side of things here. I will do my next health based post when I have news r.e my PIP application or Wheelchair referral.
Who is Julie?
30 something, mother of two gorgeous boys, lover of one gorgeous husband, perpetually living in a dream world full of wine, chocolate and artsy crafty things.