Update, As Promised

Hello, nice person.

Thank you for waiting so patiently for this latest update.

In the last update (here), Husband was in Mexico, and I was struggling without a carer, fighting with the complicated ordering systems for my medical supplies, and trying to fight off a persistent infection.

Things have changed a little, but not as much as I might have liked.

The good news is that I’ve managed to do lots of fun things – Thanksgiving was great fun (more on that another time), and I’m looking forward to Christmas. I’ve been out a couple of times, shopping in our local area, enjoying the festive sights, sounds and smells, and taking advantage of the dry weather by walking in our local park (really just an excuse to drink hot chocolate in the cafe), and have had a few visitors at home, as well as a few Skype ‘visitors’. There has been payback (there is ALWAYS payback), so I’ve spent the rest of my time lying down, reading, working on my crochet blankets, Christmas crafts, and snuggling with the adorable fluffball.

The infection around my jejunostomy tube (the feeding tube that goes straight into my small intestine) is still determinedly present, despite three courses of intravenous (IV) antibiotics. The most recent swab didn’t grow anything, possibly because the antibiotics reduced the number of bacteria enough that they couldn’t be measured in the lab. My GP considers this ‘case closed’ despite the fact that my tube site is still hot, red, swollen, painful and oozing large amounts of foul-smelling pus. The smell bothers me more than anything else. The pus is ruining my clothes, leaving them wet, stained and sticky; combined with the smell, this makes me feel extremely self conscious, and reluctant to be near other people, even my husband. Feeling so unattractive and dirty is making me even more isolated than usual. I have had contact with a few close friends over the last few weeks, but I can’t help worrying that they are repulsed by the smell. I certainly am!

I was scheduled to have bladder surgery next week, but have cancelled it for now. It’s not just that it’s too close to Christmas; rather, it’s too much medical stuff, regardless of the time of year.

There are times when this medical roller coaster ride feels too much; too fast; too painful; too difficult. I am overwhelmed by the desperate urge to get away from all of it.

“Let me off! I need to get off!”

I feel like ripping off all the patches, dressings, splints, tubes and monitors. I want to throw away all the medications and supplies and just forget about everything health-related. I’m so fed up of having to have all this stuff in my thoughts All The Time, and of the constant reminders that I’m not ‘normal’. The boxes and boxes of supplies and medications, the equipment that clogs up all my plug sockets, the tubes and lines and scars that mark my body might as well be neon signs, flashing negativity into my mind. I have to shut it out, and run and run and run, away from it all.

I know that all this medical gumph is what keeps me alive and medically stable (ish), and most of the time I’m extremely grateful for that, but the feeling of panic doesn’t come from a place of logic and reason, and the more I try to rationalise it, the louder the volume of the panic-beats. So I’ve cancelled the surgery. I’ve also stopped taking the least important of my medications and stopped answering the telephone. Silly, I know, but it’s the only way I feel able to reclaim some control. I’ve promised myself that I’ll get back on top of it all after the holidays, but for now I am being kind to myself, and not piling on the guilt about being a bad patient and not taking care of my body properly.

The problems with the carers (I’ll refer to them as PAs – personal assistants – from now on) are ongoing, and I’m sure that’s not helping with my feelings of being out of control.

Together with my care agency, I’ve been trying to recruit a couple of PAs to work 32 hours per week between them – during the day, Monday to Friday, with flexible hours. Perhaps naively, I thought that there would be lots of people keen to work for a few hours a week, within school hours, especially as there are so many young families in this area, but that certainly hasn’t been the case so far. We have been advertising for almost 18 months, and in that time, we have received almost 100 applications.

Of these initial applications, about half were rejected immediately – mainly because they gave the impression that they were applying for every job listed on the site, in every employment category. The remainder were contacted for interview, but we were only able to get hold of 14 of them, and four of those didn’t turn up for interview. Of those that did turn up, two were not suitable for the job.

And then there were eight.

The eight successful candidates were formally offered the job, and were booked onto the 5-day specialist training course.

One candidate accepted another job before starting her training, one went AWOL part way through the training (we later found out that she had returned to her home country), and two failed the training.

And then there were four.

One completed and passed the training, but then stated that she hadn’t realised what the job involved, despite having had two interviews, a meeting with me (during which she was shown around my home and given a detailed run-down of some of the regular tasks), and approximately 35 hours of training.

And then there were three.

One worked with me full-time for a week, and did a great job. I felt very positive about her work ethic, liked her personally, and felt that she was picking up the individual training from me very well. But she resigned without notice at the end of her first week, stating that the agency was too disorganised.

And then there were two.

One worked with me for nine months and then moved on to another client within the same agency.

And then there was one.

The last candidate worked for me for four months, but called in sick with less than an hour’s notice on 20% of the days that she was scheduled to work, and then went off-radar and no-one ever heard from her again.

And then there were none.


Stella Young, Disability Activist Extraordinaire

I’m behind on updates again, but they (and you) will have to wait a little longer. Today I want to remember a remarkable person called Stella Young.

Stella died quite suddenly on Saturday, aged 32, leaving the world slightly less bright. Stella’s medical condition, like mine, is one of a handful of ‘heritable disorders of connective tissue’ and it is believed that she died of a ruptured aneurysm. This is quite common within this small group of conditions. The collagen is so weak (in Stella’s case, brittle rather than stretchy) that it allows the walls of blood vessels to stretch in response to the pressure of the blood inside, rather like an old and over-inflated balloon. This stretched area is weak, and can burst. If the aneurysm is in the brain or in a very large blood vessel, it can very quickly lead to death.

I didn’t have the privilege of knowing Stella personally, but I’ve admired her for some time. She had a wonderful way with words, and an openness and warmth that sweetened her strong opinions. I have read and reread many of her articles, wishing that I could have written them.

You may remember the post that I wrote some time ago, in which I complained about the lack of internal filter that some people seem to display (it’s here, if you need a refresher). Stella spoke about something similar in a Tedx talk earlier this year, and made her point far, far better than I could have done.

The video is nine minutes long, and is time well spent, in my opinion.

With gratitude for the life of Stella Young:


*Say not in grief, “She is no more,” but live in thankfulness that she was.

Hebrew proverb