Random Bullet Points of Health Related Life

♥ I still don’t have my new wheelchair cushion. I had my fitting appt at wheelchair services but that was the worlds biggest waste of time because they didn’t have it. The story is a bit more complicated then that and totally ridiculous as well as very badly handled. I made a complaint to PALS about that. It made me feel better if nothing else.

♥ I was diagnosed with anaemia about ten days ago. It was borderline but based on symptoms I’m being treated with ferrous fumarate (prescription strength iron supplements) three times a day for 8 weeks. I keep wanting to call it ferocious fumarate. Sophie said when she was anaemic and had iron pills she felt great. I’ve been feeling crap – nauseous to the extent that on Wednesday I was on my way home and I was convinced I was going to projectile vomit on the street (I’ve not been sick at all). I decided to persevere over the weekend and I’ve felt ok yesterday and today.

♥ I had my 6th UTI of this year. GP I saw this time thinks I’m getting cystitis and not full blown infections and prescribed me nitrofurantoin to keep in the house. 1 on symptoms and a litre of extra water then give it 24 hours. She also said she thought if I took 1000mg vitamin c a day I’d stop getting infections. We shall see.

♥ I’ve started trying to take better care of myself. Baby steps is the plan. At the moment that’s taking most of my meds (well, it was meant to be all but I appear to have run out of sertraline). It was also improving my sleep pattern but that’s slipped big style this weekend.

>Changing my meds

>Mostly for my own records because otherwise I won’t remember when this happened and it might be useful at some point in the future.

Went to the Dr today.  I was very nervous about going to talk depression for some reason and threw up before I left. Not that unusual when I’m anxious but not nice. At all.  It wasn’t my usual GP but a different one (who I asked to see as my GP was unavailable and I’d seen him recently and knew he was easy to talk to and also good).  The different in perspective and opinion on my meds was interesting

Baclofen increased to 40mg a day (well, script was for between 20 and 40mg a day depending on what I think I need, have mostly been taking 30 but Dr says up it to 40 permanently).  I think I’m now on 3 for 3 for Drs appt when “increased spasticity” has been noted down. Possibly 4 for 4 if we count the out of hours GP I saw on Sunday who commented on my spasticity levels. Regardless of the actual number, I hope my next visit will have “slightly reduced spasticity” on my notes.  Or at least, here’s hoping.

Fluoxetine stopped.  He was going to increase it as he said the dose I was on was too little for someone with chronic depression let alone with my current problems.  But then I told him about the “fluoxetine increases my spasticity” theory and he immediately said “change it”.  That’s why my baclofen hasn’t been properly increased as the hope is the lack of fluoxetine will improve my spasticity too and is the difference in opinion I was mentioning. My regular GP had been of the opinion that all antidepressants (well, I assume she meant SSRIs) would probably have the same affect and I get too much out of it to consider changing.  So my prozac princess days are over. No med taper needed which surprises me.  For some stupid reason it feels weird and as if I should take a ceremonial “last fluoxetine”.

Sertraline added.  New antidepressant.  100 mg a day which is the “middle dose”.  That’s meant to be quite a “clean” drug with few side effects.  However the leaflet lists “depression” as a common side effect which has been making me laugh all day.  We shall see.

As I eluded to above I was at the out of hours GP on Sunday.  I was absolutely convinced I had a UTI having woken up with symptoms and a bad pain in my back over my kidney.  The dipstick didn’t show enough leukocytes apparently to be a definite UTI but that could have been because of how much I’d drunk and she was wondering if the pain was a muscle spasm. Plus she said I have a curve in my spine right by the pain.  She gave my antibiotics just in case (Cefalexin which I’ve nearly finished).  This whole thing led to me having a melt down on Sunday after I got home about how I was a burden, had wasted the drs time and ruined my parents day.  I’d already been struggling with my depression but that was the straw that broke the camels back so to speak and had my mum going “either you’re really ill or you need to go back to the Drs about your depression.”

My GP informs me that what I did on Sunday was The Right Thing To Do.  UTI’s freak me out which I told him (he agreed they are nasty) and with my having two v.close, one of which needed two courses of antibiotics to shift and my history he suggested I do a course of prophylactic antibiotics again.  Which as I said to him I’d not wanted to ask for but had been wondering if I needed.  So we have Nitrofurantoin added in for 3 months (100 mg once daily).

Oh and my Mefenamic Acid, Codeine and Paracetamol escaped the appointment untouched!

>You know you’ve got a bad UTI when…

>I’m slowly getting over this UTI.  I am however on my second type of antibiotics for it.

I was put on Nitrofurantoin on Friday. 100mg x 4 daily for five days.  Normally people are given 50mg x 4 for three days but I warranted a double dose and extra days due to my history.  You know it’s a bad UTI when the doctor takes one look at the sample and goes “yeah you’ve got a UTI my love” before he’s even stuck a test strip in it. Also, how fast did that strip change colours?!

By Monday lunch time I still felt absolutely shit and that was after 3 days worth. My back was really starting to hurt and I was beginning to panic it was going to my kidneys.  Rang and spoke to the duty doctor.  Switched me to Cefalexin 250mg x4 daily for 7 days on the assumption the Nitrofurantoin wasn’t working which surprised me a bit as it’s worked for me before.  I have had a lot of it in the past although not for a good few years.  I took another sample up. Don’t know what it showed but it still had the signs which meant the dr knew I had a UTI before he tested it on Friday.

I’m feeling a lot, a lot better since I stopped the Nitrofurantoin and started the Cefalexin.  In fact I was surprised how quickly I started feeling better.  I still feel totally washed out and tired.  I made it sailing yesterday but it took sleeping most of the morning, going back to bed for an hour and a half rest in the afternoon and a very early night.  And I only managed a very brief sail – when I came in they all asked what was wrong and didn’t I want to go out for longer?

Today again I managed some of my usual Wednesday stuff but it took staying in bed until the last possible minute, a long sleep in the afternoon and I’ll be headed to bed after Masterchef me thinks.

Logically I do realise that a lot of this has to do with going to Naidex last week.  I didn’t drink enough one of the days (or rather I did but didn’t space it well enough to keep my bladder flushed out) and I got really tired which would have taken me a few days to get over and add in this infection and it’s just all worse for it.  But I must admit to being really freaked out.  I have a long and painful history of UTI’s and I’ve needed months of prophylactic antibiotics before to really break the cycle and totally clear them.  And last year one went to my kidneys and I was sat with an out of hours duty doctor asking if I wanted to be hospitalised.  I’m just hoping that this will be a one off and not the start of another lot of problems…

>Not really an update

>Naidex was fun.  If you’ve been following my twitter stream for the past few days you’ll hopefully know that.  But you’ll also know there was lots of access related fail which made for stressfulness and made things difficult.  And if you’ve seen my twitter stream today you’ll know that I woke up this morning to the realisation that I must have seriously misjudged my fluids yesterday and not drank/been to the loo often enough because I felt crap and possibly had a UTI.  I’ve been to the Dr who has confirmed my diagnosis and given me antibiotics.   Fully updating on who I met, what we did, what was fun, access fail etc will have to wait.

>The Return of those Three Little Letters I Love To Hate…. U-T-I

>Alternate title: they said I had a UTI and how I wish that were true.

I’ve been a pretty poorly cripple.  This is copied from an e-mail I sent to a friend yesterday.

Basically went to bed Thurs with bad back pain but didn’t think too much of it as I get that. Woke up middle of the night with my sides and tummy and back all really badly sore and feeling sick. Couldn’t lie down coz of pain. Went to docs who said gall bladder attack mostly but also UTI gave me antibiotics and anti-sickness stuff but spent the rest of the day throwing up despite them and my codeine wasn’t touching the constant pain so nhs direct got me in with out of hours GP. Who said I had kidney infection, debated admitting me (for pain relief) and in the end gave me two injections and sent me home saying if I was no better in two hours I’d have to be admitted and he suspected he’d be seeing me later for that. and sent me home with my 4th prescription of the day. Didn’t end up needing to be admitted but mum stayed over w/ me just in case

Woke up Sat feeling better but not 100%, not quite feeling as great today (but suspect the two jabs have now completely worn off). I’m surprised how well I am though.

Given that I came out of my chair on Tuesday it’s certainly been an interesting week!

The rest of the e-mail is irrelevant to this.

When my GP said I had a UTI I was sitting there going “I what?!” because I’m the queen of UTI and I always know when I’ve got one. I’d had very little dizziness and no other symptoms which scream UTI (although I have since) And there was pain but that didn’t feel like a UTI to me. Positives here include the fact that the GP who was not my regular one listened to me about which of my two regular UTI abx I wanted and the fact that I wanted 7 days worth not 5 – he asked if I have allergies I told him and also mentioned that I don’t tolerate one of the usual abx of choice for UTI well so usually have X or Y and he went “which do you want?” LOL. And it’s my first UTI since September 2008 which is huge. Now if only it was an an actual UTI and not a kidney infection I would be happier.

When the out of hours GP was debating admitting me he asked if I wanted go in and I was just like “I don’t know”. In the end he gave me the two jabs (diclofenac for pain and stematil as an anti-emetic) and sent me home with a packet of oral diclofenac to last me over the weekend as he thought the hospital would suggest that as a first try. I must admit that when we were getting in the car and going home I was wondering why I was going home to see if I felt better in an hour an a half if the doctor was that convinced I’d end up admitted. Surely as a GP he knows these things?! But actually the drugs kicked in and I’ve been able to keep my pain under control since.

Today I am still washed out and not right. I’m pushing fluids a lot and napping and taking a lot of meds (pain killers, anti-emetics and anti-biotics on top of my regulars). I’ve a feeling this might take a few days longer. I’m not having early nights though due to naps. Apart from tonight, they have been earlier nights though.

And yes, last Tuesday I came out of my wheelchair at sailing. I wasn’t hurt, just scrapes etc and a bit sore because I caught myself with my arms. The best thing about that was that all the people surrounding me who offered help asked how they could help. And understood and respected when I said “don’t try to help, let me try.” I did end up having to have help back into my chair as the surface I fell onto wasn’t good for an Emma to do an unassisted floor to wheelchair transfer but they checked what I wanted them to do before they did it. That’s really, really great. Because not many people do that and many has been the time where it’s made things worse. There’s also been a few times when people have tried to stop me falling or pick me up – and I’ve gone anyway (or again) – and taken them with me.

Finally, I’ve lost 2 and a half lb this week. I’m not sure how much of that will be true weight given that I ate a grand total of one thing on Friday and threw that straight back up along with most of everything I drank. But I figured it was worth weighing so I knew where I am. I expect to see a small gain or a maintain next week because of being ill but I’ll be very happy with that. So – for this week only – I’m down 17lb.