I am happy to report that health wise these last few weeks have been pretty uneventful. Socially it has been quite busy, but those of you who know me wont find that much of a surprise!! The fatigue continues to persist and I have been getting quite a few low level headaches, as well as the occasional incidence of light-headedness. But I am getting better at listening to my body and resting more.
Just after my last blog, my friend Bridgette came down for a visit during the half term break, and we had a proper girly time together. As she still lives up in Barrow-in-Furness we don’t get to see to much of each other so always try to make up for lost time. Therefore the hairdressers, a night out with the girls as well as a bit of shopping were all on the agenda. Also no visit is complete without a walk down to Trentham Gardens, although for the first time I can remember we did not set foot in the bedding shop, but a few of the other shops did very nicely out of us…
Unfortunately I did succumb to a bladder infection, I have been symptom free since finishing my 3 month prophylactic course at Christmas. Only two lots of antibiotics were required this time, but fingers crossed it is just a one off, as I do not relish the thought of being on a longer course of the daily antibiotic. I rattle as I walk as it is.
I had my 3 monthly visit to see my consultant at the beginning of March too, he had a rang me prior to this let me know that my emergency CT during my last bloating and cramping episode had shown nothing untoward, and that everything remained stable. However, he had spoken to the surgeon again and their view is that as these episodes are getting closer together some elective surgery may be necessary. I had also gone through my daily diaries before this visit, which I started to keep when first diagnosed, to check how many and how often I have had episodes of the extremely painful cramping and bloating, putting all the dates into a spread-sheet. This showed without doubt that they are getting more frequent with smaller gaps in between. I see the surgeon again this Thursday, 16th March, to continue the surgery conversation that we started in January.
Due to the symptoms I mentioned at the start I decided I should keep a closer eye on my blood pressure too. For the last few years it has been all over the place, through the ceiling one day and through the floor the next, I have gone from being a rock solid 120/80 to very unpredictable. However, at the moment it seems to have settled on the high side, so now I am waiting to see the GP about blood pressure medication. I know that with this I need to be aware of my heart, as it can also suffer as a result of this disease, but some days you really do just want to stamp your foot and scream enough is enough.
On a more positive note, I did get to meet one of my fellow Netters, James Dadge at my consultation, who is also from my old neck of the woods, it’s a small world. It is also the first time this has happened at a consultation since diagnosis, even better he has the same consultant as me, and we are both very happy with his care of us. It was so nice to have somebody else in the waiting room that you can not only share a bit of your journey with, but they can relate to it too.
I did have another consultant’s appointment taking me back to North Staffs Hospital with my endocrinologist. Without this guy I sometimes wonder if I would still be fighting the system for a diagnosis. When I was transferred to the Christie, we agreed that I would continue to see him every 6-12 months for a catch up. But when I got there this time it saw somebody else, which I could have just about coped with if they had been polite and shown some knowledge of my case.
However, the only thing they were interested in was my medication and how the are monitoring it, which was a strange comment to make when I am not technically under their care at the moment. When I asked why I was not seeing my usual consultant and if they understood the reason for my appointment, their response was ‘I have read your notes’, ane as the conversation progressed it was blatantly obvious they had no clue as to why I was really there. To say I was annoyed was an understatement, I always look forward to these visits because this consultant is such a nice man, very polite, caring, interested and interesting. I view it more as an information exchange.
As a result of working to keep my annoyance under control I forgot half the things I wanted to say. I came out of there feeling like it had been a complete waste of not only my time but their time, and that I had taken an appointment that would probably have been a lot more useful to somebody else. Needless to say I rang his secretary the next day, I explained what had happened, and she apologised (although their behaviour wasn’t her fault) and has assured me that my records have now been updated to say that any future appointments are consultant only. I will be checking in advance though next time I receive an appointment just to be on the safe side. I also hope that the person I saw works on their communication and peoples skills.
Anyway, getting back to the social aspect of my blog, I also met up with my old work colleagues Amanda and Jas. Amanda and myself try to get together on a regular basis, but I hadn’t seen Jas for about 7 years although we had kept in touch. We had a great afternoon, but it all went to quickly, as it always does.
Then yesterday I had Sunday lunch with the rest of the work gang, apart from a couple who unfortunately couldn’t make it. Rather than going over to Telford, they all very kindly came over here, so I introduced them to the delights of Trentham Gardens, and once again it all went to quickly. I do miss their company, so it is lovely to be able to get together on a regular basis and catch up with what we are all up to.
Plus, I have decided that I would quite like to change my car, I drive a mini which I love. I had driven a few in my youth but had never been able to afford to own one, finally after 30 years I achieved it. However, when I bought it 3 years agoI went for the practical purchase rather that the mid-life crisis one (so to speak). In that I needed an economical workhorse to cover the mileage I was doing, so I opted for the Mini One Diesel, when what I really wanted was a mini coupe.
Subsequently a couple of weeks ago I decided I would have a test drive just to make sure I really would like a coupe, it was the visibility that worried me most due to the slopping roof, no worries there though I loved it and could see just fine. Now that I am not doing the miles anymore I think that when I have saved up a few more pennies I may just bite the bullet and go for it.
“I’m not afraid of dying, it’s time I’m afraid of…” Interstellar 2014
Kath Lewis 