You know you've got CP when...

...getting a date for a hospital appointment through is a very good thing!

Yes, after a three month wait I am going to Outpatients to see the Neuro Physio next week.  As much as my spasticity levels have dropped since switching from Fluoxetine to Sertraline I still need them sorting out as they aren't good, still.  I'm quite looking forward to seeing the physio and hearing what they have to say.  I just hope it isn't disappointing!

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!

I've Had Enough

It's three and a half weeks since my powerchair broke down.  

And I've done relatively well since then.  I'm proud of how well I've done in fact.  I've done more wheeling in my manual chair than I probably have in years.  Admittedly I was in a lot of pain for two days after with a very sore neck and achy shoulders but doing so felt good. And the tears have only fallen once (although they came close to coming again this morning.).  A big part of that is probably my antidepressant - but that's why I take it and a big proof that it's working.

Wheelchair repairs taking a long time is normal.  Wheelchair parts aren't like car parts and they can take a while to come.  I understand that.  That's "disability normal"

And I do realise there are people who get to go out a lot less than I do even without my powerchair.  That need powerchairs and don't have them or who can't get out of bed. Who don't live in fully adapted flats like I do.   I'd usually be the first to tell you that I'm very lucky in more ways than one

But not today.

Today I've had enough.

I've had enough of not getting out for days.

I've had enough of not seeing people on some of those days

I've had enough of understanding that wheelchair parts take time

I've had enough of going to the supermarket or wherever when someone can go with me not when I want to.

I've had enough of thinking of those who have it worse than me

I've had enough of having to tell my friend my PIN so she can go to the cashpoint for me.

I've had enough of online shops and waiting for parcels to be redelivered because I can't get to pick it up

I've had enough of someone going to the bank, post office or library for me.

I've had enough of managing more in my manual chair and feeling good about that then paying with lots of pain the next day or two

I've had enough of not knowing when my chair will be back
I've had enough of freaking out my friends with how down this situation made me

I've had enough of begging for lifts and favours

I've had enough of apologising and feeling guilty (everyone's understood and no one has minded but...)

I've just, basically, had enough.

I want my powerchair back.

But most of all I want my independence and my life back.

I am feeling a lot better about all of this than I was earlier today.  But sitting here writing this it occurs to me that I am lucky.  If the planned cuts to services and benefits here in the UK go ahead there'll be a lot more people in the position I've been in for the last few weeks.  The difference is, however, when I get my powerchair back a lot of that should be allievated for me - and it shouldn't be more than another week (I hope!).  For many of those people, that possibility wouldn't exist.  It might never exist again.

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.

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.

A Bordering on TMI Update Type Post

Being that it's over a week since I wrote a "proper" catch up type blog entry I thought I better see what I could do about that right now.  This entry contains items which fall under the category of TMI - you have been warned!

The goals I wrote about a few weeks ago are... OK but kinda stalled.  My TV license is renewed, I've e-mailed or called or spoken to on facebook chat most of my friends I wanted to catch up with but not all.  I have looked briefly into changing my ISP but need to do more for that really.  I haven't even started my shawl I want to knit.  And the no coke and no chocolate thing went really well. /sarcasm. I gave it up Sunday afternoon and was back on it Tuesday lunch time.  Yeah.  Need to work on that one a bit harder!  Although I am pleased that the Monday was a terrible day and I was really upset about something that happened and I felt ill from the lack of my treats but I still stayed strong.  Working on my emotional therefore I eat link is probably more important.

I went to the doctors last Tuesday to get my prescription renewed.  It was actually only my fluoxetine that needed doing but she's done both.  My baclofen dose is now written differently so I get more each time I get a script and I can take it up to four times a day instead of the twice I was taking it.  I need to read up on that a little because I've got a feeling it works on building up to get the full effect so taking an extra here and there on bad days may not be the best way to do things.  Anyway I've been taking three a day since then.

There was some discussion when I last went that I might have polycystic ovaries.  Which is a wonderful condition which little is known about I believe.  I am assuming she means PCOS but since then I've done some reading which suggests it's possible to have the syndrome without the cysts or the cysts without the syndrome.  Basically I've been skipping periods and then having really long heavy ones and then getting another period really soon (too soon) after the last one and lather, rinse, repeat, basically.

For example I had a period mid October.  Didn't get one again until 1st Jan which lasted until the 14th and then got it again on the 31st. That lasted my usual five days only which I was relieved about.  I must admit that I was beginning to get concerned that I could end up anaemic.  And yes, I do know that this is TMI for a lot of people but 1) I believe in sharing because it could help others (or me) and 2) I find it useful to have this noted down for my records.

Anyway she said the hormone levels I had done in August weren't particularly worrying (she used a different phrasing but that's what she meant) - I was concerned about their validity as I got a period two days after they were drawn but she didn't seem concerned about that.  There was some discussion about ways that we could treat it (i.e. regulate my hormones) which would be difficult as I can't take the pill - if you took a list of possible side effects and contraindications of the pill you could cross out contraindications and retitle it "reasons Emma can't take the pill" I have that many of the contraindications.

The suggestion was Noreisterone for so many days between certain days in my cycle each month to make me bleed.  But in my situation she prefers a wait and see approach and to see if my losing any weight makes a difference in the situation as she thinks my weight is probably what's caused the polycystic ovaries.  That makes sense to me as it treats the probable underlying cause as opposed to just the symptoms (screwy periods mostly).

So I'm to see the nurse again on Tuesday to chat about my weight progress (I set that up before I saw the dr) and then I'm going to be getting on with this with a vengeance again.  My Dr did comment that I look a lot better than the last time she saw me and also that I look slimmer too. She also commented that I'm sitting better in my wheelchair which is interesting. Plus on the same day my sister commented that my tummy looked smaller.  Progress!

I've played on my Wii everyday apart from one since I got it - I use it for exercise and I really think that's got a lot to do with my current success.  I do wish that I had my scales back already though - so frustrated that they broke and I've not heard from them (returned for repair or replacement due to the warranty).  But it's not been long enough really to chase it yet.

The games I have are Wii Sports, Wii Sports Resort, Just Dance and Samba de Amigo.  I play the Sports Resort and Just Dance the most really and Samba de Amigo is probably the one I play the least.  That's hard. It kills my arms.  Fun though.

I'm going to be doing some accessibility and/or disability awareness type work with my housing association it seems.  In fact I met with my housing officer on Friday and we spent half an hour walking around the estate I live on so I could show her areas where access isn't great.  I think the fact I nearly came out of my chair going down a slope at one point (a part I don't go to usually) really highlighted the fact that a better ramp is needed there!  Plus she asked about things I hadn't considered too.  There are two more things I've been asked if I'll do (but not arranged) and a few more possibilities so that's good.  I won't go into how that came about because it's not all resolved but I'll just say that it seems like good things come to those who complain!

I think that's probably about it for now