>Updates

>Recent happenings and not so recent things I’ve forgotten to mention but occur to me now:

I’ve made some baby steps on the way to starting to lose weight again so I’m hoping the scales will start moving downwards again very soon!  Specifically I’ve given up coke and chocolate again.

My leg is still nasty but is improving very slowly.  I’m really glad they gave me more antibiotics after all because clearly they are doing something.  Being on this level of antibiotics and having been on antibiotics for so long is making me feel a bit rubbish though!  I’ve been resting a lot these last two days and trying to take better care of myself and as a result I’m not feeling as run down.

I was driving myself crazy trying to figure out if the Sertraline is helping me and not coming to any conclusions.  It’s too soon to tell however so I’ve decided to (try to) forget about that question for now.  I’m certainly no worse and feeling a little bit more positive for having taken control back.  Equally I keep deciding that my spasticity is a little less with coming off the fluoxetine and upping the baclofen and then deciding that no, it’s not.  I meant to ask my mum when she popped round this evening for her opinion but then completely forgot when she was here.

I am now on the waiting list for a neuro physio assessment, having been encouraged to ask for that following my free 30 minutes with a physio at Naidex.  I’d decided not to ask for that as I didn’t think I had any options other than more baclofen and botox.  More baclofen the GP can and does do and botox is not something I’m prepared to consider.  But chatting to the physio was really good and it appears I have several other options I’d not realised I had.  No idea how long the waiting list is though.

Meet the physio made staying overnight at Naidex and all the hassle that went on worth it.  Meet the OT, not so much.  She started off by commenting that she didn’t know why I’d bothered to make an appt as I had Sarah (@GentleChaos, who is an OT as well as a crip and who knows that OT I think) with me.  Totally missing the point that Sarah’s my friend and I don’t want to make her my OT as well!!  And then when I asked my question about wheelchairs she started trying to tell me I should learn to drive and then about places where I could get special wheelie clothing.  Anyway, enough about Naidex.

Have been wondering about the possibility of going to Stoke for a day to visit some friends and revisit my old uni days haunts.  Having looked at the train times however I’m sure it didn’t used to take that long and therefore having a rethink on the possibility… it’s not out but it’s more of a maybe than I thought.  I’d like to go back to Stoke for a visit and we’ve been trying to come up with different things to do when we meet up (usually in Birmingham) which is what made me think of it.  Looks like I might need to investigate some other options as well..  Not going away this summer but would like to have a couple of days out doing something different to usual.

Speaking of days out, I’m speaking at an event in Coventry on Tuesday and then one in London the Tuesday after.  I’m looking forward to them even though the topic wouldn’t have been my first choice to go and speak about.  Plus, it’s nice to be asked to something that hasn’t go to do with being a crip for once!

>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…

>In which CP makes things complicated

>Sometimes being disabled is soooo complicated.

Yesterday, I saw my GP.

When I was waiting to go in something made me jump – and then spasm (my CP means I jump really easily and jumping usually triggers spasms of some form).  This woman sitting opposite me went “oooh that made you jump” which was apparently the funniest thing ever because she burst out laughing as she said it.  Pretty upsetting.

My GP asked how I was when I went in and I said “OK” but I was feeling down because of that. Luckily she knows me and went “what does that mean?” So I told her, generally I’m good but this has just happened.  We had a bit of a chat about that and she said supportive things.  One of the things we said was that people might find it funny but it’s my life and that’s not funny from that point of view.

Then she started asking about my antidepressants and my muscle relaxants and I was all “hang on this isn’t what I’ve come for!!” Which she said she knew but she wanted to talk about it while I was there.  I think the decision has been made that I will remain on antidepressants permanently.  It was something she brought up and as I said to her I was diagnosed practically 8 years ago and have spent most of the time since on antidepressants and maybe that’s just the way it’s going to have to be from now on.  Her comparison was that people who have high blood pressure take medication almost all the time and it’s just the same.  That didn’t bother me as much as similar comparisons have before (although if anyone ever does the physio for CP is like being a ballet dancer comparison again I may have to scream at them).  I do think my depression is a lot more stable than it’s been for a long time which is good.

On the subject of Baclofen I said that my spasticity is really bad at the moment. Which got a “so I can see, best make a note of that!!” type reaction.  My left leg was locked out with no bend in it at all.  I think she was very surprised at how bad it was.  That’s when things got interesting

She looked at my feet and said they look great but I should probably have another two months of Terbinafine to really knock the infection of the head.  But did I think the Terbinafine was affecting my spasticity? Which really confused me for a moment as for some reason I thought she was suggesting it might be improving it. Which she wasn’t.  But what she was actually suggesting was that the combination of the 3 (Baclofen, Fluoxetine and Terbinafine) was doing something to the levels in my blood.  “oh yes” says I “I was told it might increase the level of Fluoxetine in my blood.”

Lightbulb moment.

I’ve been totally convinced for the past 18 months that Fluoxetine makes my spasticity worse.  My GP thinks I might be right. (I changed antidpressants to Fluoxetine in Sept 2004, starting having hip problems caused by spasticity Dec 04 and went on Baclofen Feb 05.  Came off Fluoxetine March (?) 08 and my spasticity dropped so I came off Baclofen too. Went back on Fluoxetine March 09, back on Baclofen due to bad spastiticy July 09).

If the Terbinafine IS increasing the amount of it in my blood (as seems likely) then it must be playing a part in my spasticity levels being through the roof, either the drug itself of the increased fluoxetine levels it’s causing.

So the question of if I wanted to stay on Terbinafine was raised. I said yes, because I want this fungal infection to properly clear up and if she thought I’d benefit from more then I want to take it.  I’ve been wondering if that was the right decision ever since!

As to my spasticity, we can’t change my antidepressant easily.  I get too down and fluoxetine works so well for me that my Dr thinks it’s a bad idea.  Most other antidepressants work on the same hormones etc so would likely have the same affect. I did suggest a lower dose (as I’d been wondering how I’d do on that for a while before this visit) but apparently 20mg is the smallest they do so that’s out.  I also mentioned the antidepressant I took before, Lofepramine, which she said does work differently.

But the plan at the moment is for me to wait it out, see if it improves when the Terbinafine ends and keep tweaking my Baclofen dose based on my symptoms as I’ve been doing for years.  She asked how much I’m taking (30mg a day) and I was a little surprised she didn’t alter my criteria (between 20 – 40mg) but as I said to her I’m not convinced it’s working and what seems to keep happening is I’m fine on one amount, have to up it, am fine on that for a while then need to up it again.

That left me with a lot to think about and also the feeling “of why didn’t I figure out this was a med reaction myself?!”  Because she’s the Dr and I’m not, obviously.  But for some stupid reason I did feel like I should have.

CP also made today more complicated but I’ll skip most of the details and just share the bit I found funny.

I was asked to go to London to talk to someone about being disabled and travelling by train.  I arranged to meet them at Paddington.  And they were crap at assistance frankly.  That’s about par for the course with London train stations.  But what really made me laugh was this (but only cause it worked out).

They have a disabled loo in the reception.  And that’s also where you go to tell them you’re there for assisted travel.  So I went in and said “hi I’ve assistance booked to go to [place]” and the woman said “oh yes is it Miss Crees?”  and I said that yes I was and I was just gonna pop to the loo.

Next thing I know she’s on the phone and I hear her say “Hi [name] it’s London Paddington assisted travel we’ve got Miss Crees here for assistance, just wanted to confirm she was coming and check you were expecting her?” and I recognised the name but not from my station.  There was a pause “oh you’re not expecting her?”  Longer pause “oh yes, actually you’re right she is travelling to [place] and not Oxford”  She then rang where I was going.

I came out of the loo quietly amused.  The only thing she said?  “I’ve told [place] you’re coming”

But it’s a really good job she messed up and not only told a station I go to but a member of staff who recognised my name and knows where I live otherwise they’d have assumed she was right (travel bookings only go to the stations involved) and things would have gone wrong.

>Reverb 10 – Wisdom

>I know I’m late to this but I only found out about it yesterday.  I’ve just signed up to Reverb 10.  I may very well go back and touch on some of the previous prompts as a couple of them are very interesting to me. But I’ll have to see how things go time wise.

Today’s prompt is Wisdom.  What was the wisest decision you made this year and how did that pan out for you?

My first thought was that I needed to put my (not really blogged about) decision to try and take better care of myself down as the wisest decision I made this year.  But then I stopped for a minute and thought about it more. That’s not the best or wisest decision I made this year.

In May I gave up Coke and Chocolate.  I was totally addicted to the both of them, drinking roughly a litre of “normal” coke each day and eating at least 100g of chocolate.  Originally that was supposed to be for three weeks, to prove that I could.  Three weeks was a random period of time that I picked in 2008 when I set that as a goal on my current 101 in 1001 list.  I was determined that was one of the goals I was definitely going to achieve.

And after the three weeks I didn’t go back to the coke or to the chocolate.  In fact I didn’t have any again until about ten days ago, over six and a half months later.

Another of my goals was six months of no missed medication.  I’ve not missed any for 10 months now.  I’m taking better care of myself in other ways, realising my limits more and trying to be more OK with who I am and what I’m doing.  I’m achieving goals and forgiving myself and being realistic when I can’t or don’t manage others.

I’ve lost a lot of weight, I feel better in many ways and my depression is more stable then it’s been in a long time.  I really struggle at this time of year usually and I’m struggling now – just not as much as before.  I’m not as stressed or worried about Christmas as I might previously have been.  Most importantly I feel like I’m clearer on what my goals are and how I’m going to reach them.

Taking better care of myself, loving myself I suppose you could say, is definitely one of the best decisions I made this year.  But when I look at it, it all traces back to that small first step of giving up the coke and the chocolate – I didn’t expect it to have such an impact on my mentally as well as physically.  And I’m not sure I could have made the decisions that I need to take better care of myself if I’d not made that decision first.

>A (Mostly Medical) Few Things

>I started a new medication last week, Terbinafine.  It’s only one tablet a day but it tastes disgusting and no matter what I do it seems to dissolve in my mouth.  I’m gonna be on it for three months, maybe a little longer (possibly up to six) which is a bit better than a new permanent medication.  That’s apparently harsh on the liver which made me worry a bit about whether I should take it.  So we agreed that I would have a blood test part way through the course which they don’t normally do.  I’m hoping the fact I’ve lost more weight will mean that it’s a lot easier to do this time!  Oh and apparently it might increase my fluoxetine levels in my blood slightly and I need to watch that.  Not sure how I do that but equally I’m not convinced it wouldn’t be a bad thing.  I’m not OMG depressed but certainly a little flat the last week or so.  Probably a result of being ill so it should go off soon, I hope.

Actually, I started another new medication a while ago but I don’t think I ever blogged about it.  That’s Mefenamic Acid and I just take it three times a day when I’ve got my period (and the day or so before if I know it’s coming which I never do anymore, *sigh*).  It’s to prevent a recurrence of the two week long bleeding nightmare periods I’ve had a couple of in the last year or so.  It seemed to work well when I took it although I would have preferred to go on something to regulate it.  But I couldn’t get in with my regular GP and the GP I saw wanted to prescribe the pill for me (instead of a few days a month of Noristerone which my GP was going to give me if it came to it, which it has).  The pill which both my regular GP and the nurse I see regularly say I can’t have (overweight, wheelchair user with a family history of DVT).  I queried it with that GP who checked a book and said I could take it but the patient information leaflet would say I couldn’t.  I said no to that prospect!

I’m really, really hoping that I’ll be almost at the 2 stone lost mark when I weigh in tomorrow.  In fact I’m secretly hoping I’ll be there but that’s 3lb+ in a week and is probably unrealistic!

Walked more on Saturday then I have in a long time.  Went to visit my Uncle and his partner in their new house which has a lot of walking in it.  It’s a lovely house with some amazing views and it was lovely to see them  My legs are feeling quite tight now however which isn’t great.  I’ve upped my baclofen for a few days (script is written for me to do that if I feel I need to).

I have been online entirely too much since I came home from the bureau.

>101 in 1001 – Item 31…

>

Take meds everyday for six months

…has been completed!

Not much to say about this one, it’s pretty self explanatory.

On my previous 101 in 1001 list I did take meds every day for six weeks.  I started that one on 1st January 2007 and actually carried it on and didn’t miss a single dose of medication in 2007.  I didn’t do such a great job of keeping it up beyond the one year mark however and I wanted to set this goal to get me back into such a good habit of meds taking again.  Obviously I’m not going to stop taking them now I’ve hit that goal.  I hope to keep it up and hit the one year mark again.

As this is a short entry here’s some 101 in 1001 stats.

Of the 101 goals

  • Approx 28 have been completed
  • I have failed with three goals
  • 4 or so are in progress right now (I think that number might actually be higher but I have 3 – 4 ones I’m definitely working on now)
  • There are three goals on the list which are “end of the 1001 days” goals
Not bad considering there’s more than a year left to go!

>Well, I never would have guessed!!

>So I’m finally seeing the Dr tomorrow to get my blood test results and discuss what needs to be done about the whole screwy periods thing.  Apparently the bloods I had done last year didn’t show PCOS so now I’m really confused.  Hopefully this lot will show something useful.  I want answers.

Must admit I’m a bit nervous about it but I do realise that if my results had been totally worryingly bad I’d know by now most likely.  It doesn’t help that I’m not seeing my GP.  Have been trying to get an appt all month with her with no luck.  And have also been asking to see a female GP if not my one (more women then men at my surgery).  But no luck with that either.  Finally I gave in and said I would see any of the GPs and they fitted me in with one of the male ones, giving me a choice of two.  I’m not that bothered really, I’ve seen him before and I didn’t really take to him but he was nice enough.  It’s not even really the subject matter that bothers me I just figured if I did need to see someone I don’t know well then a woman might be easier.

It does make me mad though.  First I had to go through a ridiculous process to get an appt which will eventually have gone on their statistics as having been arranged within 48 hours of requesting it per their policy despite the fact I’d been trying to do it for two weeks and it was the 5th time I’d tried to do it.  And what about the right to request care from a female GP?

Anyway, I’ve just been googling various bits about it so I can be prepared with questions I need to ask etc.  One of the things I wanted to check was contraindications for the Pill because I know I can’t take it and I don’t want to.  But it is one of the usual treatments for this sort of problem so I wanted to be clear on it.

The very first thing on the webpage I read was “Not to be taken by pregnant women”

Yeah, I never would have guessed that!!

Did make me giggle though 😉

>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.

>Going Great

>One of these days I will get here to blog with enough time to write something properly.  I really will.  In fact I hope it’ll be tomorrow.  But it’s not tonight.

I weighed this morning and I was down 2lb!  Sooo pleased with that as I was convinced I’d show another gain due to yesterday’s particularly bad eating and the fact I’ve snacked a bit more this past week.  Down 12 and a half overall so that’s last weeks gain gone again and a little bit more

But I think really I have been snacking more but still less than I would have done back in the days when I was eating chocolate all the time and drinking coke.  It wasn’t unheard of for me to get to the end of a day and realise I’d had nothing to drink but coke all day and then quickly drink a small bit of water to “make it better”.  And now it’s been over a month since I’ve had either.  It’s definitely got a lot easier but I’m not sure I’d say it’s easy as such.

I am wearing brand new linen three quarter lengths from Evans in a size 22.  At the beginning of the year I was wearing a size 26 in their trousers. It’s all very yay!

Also two others things I’ve noticed

  1. I have more definition in my face.  Not much but some.  Feels a bit like my chin is a bit pointy again.  In a good way.
  2. My feet are less swollen.  My being in a chair all the time means the blood pools in my feet and they swell a bit (or a lot if I’m honest).  But not as much any more.
So it’s pretty much going good.  Add in four months with no missed meds and it’s going great, in fact.