Scared. Excited. Scared

TBO and I have been and paid a deposit on our wedding venue today.  Makes it kinda real.

I'm alternating between "YAY" and "EEEEEK". 

But then again, I'm generally undecided at the moment.

Pain levels and spoons fluctuate daily.  One day I'm almost thinking I could start going back to work, the next day I need to be helped out of bed and can't go further than the sofa.

I keep thinking about possibly doing a college course, or re-starting my OU studies.  But then the next day my brain's too foggy to even read a magazine. 

I know I need to lose more weight.  Mainly because I've got a wedding dress to get into, and because, actually, despite me getting into a size 14 (from a 24 at the start of last year), my BMI still has me down as obese!  But then I'll find myself eating everything under the sun and wondering why I'm putting weight on again (and spending a fiver a week to find out!)

One thing I do know, though, is that I love TBO and cannot wait to be his wife.  I can't wait until it's just "us against the world". 

And I'm not mentioning the fact that that itself scares me.  Being married equals being responsible, in my head.  I'm not sure I'm grown up enough for that! 

Changes

So much has changed, and yet everything is still the same.

I haven't used a stick now for 2 1/2 weeks :oD  I'm still wobbly when I'm tired and I need to still have one with me just in case.  Except the other day when I could've done with one, I didn't have one. 

I met TBO's parents.  They're lovely.  Having met them, and spent over 24 hours in their company, loads about TBO makes more sense. 

Boo has passed her driving test. 

And the best bit?  I'm engaged.  We're planning on September 2012 and I'm dragging TBO round venues like there's no tomorrow.  Because I want to get married on a Saturday, I want to get the venue booked NOW so I can then relax for a bit and enjoy being engaged.  I don't want to have to be rushing round like an idiot next year and end up taking somewhere I don't totally LOVE just because it's available.

But nothing really has changed. 

I'm still so tired.  Just getting out of bed and going for a wee knackers me so much that I can't think about dressing properly.  Most days I've just thrown something on so that I don't scare the neighbours. 

I'm still in pain.  Yes, it's definitely gone down since I stopped working, but it's most definitely still there.  And I can't contemplate NOT taking tramadol, but sometimes I'm able to skip a dose.  Most of the time, I'm counting the hours until it's pill o'clock.

I'm still not sleeping properly.  Insomnia is not fun.  Especially when I know that I'll suffer for days afterwards. 

Everything still takes so much energy.  And I'm realising just how little I have to spare for emotional stuff, or how much properly *thinking* takes it out of me. 

I mean, I've had my first bath today in two weeks.  I just haven't been able to spare the spoons.  I really could've done without it today, but I was starting to scare the kittehs and my hair was almost doing a "Flock of Seagulls" all on its own.  And the other night I was actually too tired to eat. 

And those who know me know how odd that is.  I mean, I did eat in the end.  But only after a few hysterics after TBO had tried to "aeroplane" the food to me. 

I've got to look to the future though.  In 16 months' time, if all goes to plan, I'll be Mrs TBO.  And that is something that I will use every single fibre of my being, every spoon I have, every...everything to make him as happy as he makes me.

One month on

OK, so it's been a month.  I keep meaning to blog, but never seem to have the spoons. 

I can't actually believe how low my baseline is.  And how far I was pushing myself before. 

The pain is way better.  I mean - I'm not wanting to vomit with it any more.  It's not gone by any sense of the word but it's definitely better.  We're talking 4/10 rather than 8-9.  Which is nothing to be sniffed at.

But oh god the fatigue.  I've never done so little and been so tired.  Pegging out a load of washing tires my arms to the point that I'd rather chop them off.  I still can't do much more than get up and get dressed.

I was hoping that by four weeks in, I'd be able to get up and shower and dress EVERY DAY, do some housework and stuff.  But instead, I'm up and dressing (into whatever's there) and that's about it.  Can't believe how tired I can get just throwing leggings or shorts and a t-shirt on.

I'm trying to find the good things in this.  I'm getting lots of time in the sunshine.  I'm spending lots of time with the kittehs, and with TBO.  But most of all, I'm getting to know my limits and what is realistic for me to achieve.

It's just a shame that it's so low.

Time for me

So reasonable adjustments didn't work.  I was all for them, work were being arseholes about it - if I'm being entirely honest I wouldn't have expected anything else.  But that is not for me to worry about now.

Now I have to worry about finances.  But I should be OK.

And I have to work on getting me better.  Rest should be aim no 1 this week.

And then next week I'm going to Naidex with TBO. 

But most of all I'm going to be sleeping, and crossing fingers for a potential PhD, because I know how much getting one would mean for him.

Now is a huge period of change.  But for once, I'm feeling really positive about everything ahead of me.  I know I've got a fabulous support network and I am stronger mentally than I have been in a while.

Oh, and I'm stubborn.  I don't think work have taken just how stubborn I am into account...heh!

Two for the price of one

OK, so I haven't blogged for ages and today I've got loads to say.

It's another one about me being scared.  But this time I'm scared about my health.

I'm falling more often.  I'm using two sticks at a time (I should rename the blog and/or the stick(s) - they're still all called Martha and one of them is definitely not called Martha) and still falling.  I'm finding it increasingly difficult to stand up and sit down.  I'm taking all my meds when I'm meant to and pain has still never fallen below a 3/10 (pain scale) and is still peaking at 9/10.  I'm not sleeping properly.  I can't concentrate.  I'm getting spasms (I always had twitchy legs when I was tired - but I used to have to be supertired to have them) lots more.  I'm much less tolerant of everything and am so snappy and irritable. 

I'm not sure how much longer I can carry on like this. 

I'm not sure how Boo and TBO would react if they actually knew how bad it is. 

I want to cry in pain every time I get dressed.  Socks are the bane of my life.  And I'm a sockaholic. 

By the time I walk to the loo from bed, I'm so knackered, I'm glad it's somewhere I have to sit down. 

I can't lift heavy pots and pans any more.  I'm scared I'm going to fall over whenever I cook and end up injuring myself or one of the kittehs. 

When I lie down in bed at night, there's no relief.  Different joints scream at me, depending on which way I'm laying. 

I'm scared that if I carry on, I'm going to hurt myself more.  I'm scared that if I stop, I'm not going to be able to start again.

So what do I do? 

Update and stuff

Yes, I know I haven't blogged for ages.  February was PANTS.  Bigger pants than normal.


Gran died at the start of the month. 
I had a birthday.  Which was mostly fab, thanks to beautiful flowers and jewellery from TBO.  But it still put me into my mid-30s.
TBO hid in his cave without telling me and I thought he was dead.  Or I was dumped.  I was wrong on both points.
Work was ...well, work.
And I kept falling over.


March has been marginally better.


Gran was buried (yes, it was 4 weeks, 1 day later).  The funeral was absolutely lovely; and the wake too.  It was nice to see so many people there that I haven't seen for ages.  And so many lovely bright colours - gran never wanted anyone in black.


TBO has still not worked out what he's doing next year.  But he's been lovely over gran and everything.


Work-wise.  Well, what do I say.  I'm still there.  Hanging on by the skin of my teeth, but I'm still there.


Occ Health recommended me think that I stop working.  Work absolutely did not want that because, despite me being so fucked and therefore hardly doing anything (by my standards) I am still more productive than most people there.  Plus, I'm working on a project that I REALLY like.


But I can't do a lot of my job any more.  Pretty much all I can do is sit and type, or use my brain for the project.  I told work this at the start of the year.  Their response? 


With pacing (which they explained wrongly) and task rotation (which they didn't understand) I should be able to do my entire job. 


I just couldn't believe it.  I've been telling them for ages that I'm having issues.  They haven't been hearing. 


Until I emailed the Facilities Manager about falling in the office (and whether all of them should go in the accident book or just ones where I injure myself).  That seemed to put a rocket up their arses.


And now I have a fit note for "sitting down jobs only". 


And that is what has happened since I last posted.

Keep calm and carry on?

I've been doing 21 hours since April last year, having worked full time since leaving education, despite bipolar diagnosis ten years ago and getting ME two (or three?  I lose count) years ago.  Now doc says I've got fibro as well.  I worked three full days a week last year and changed to four afternoons since the New Year because I was finding it really difficult to manage a full day in the office. 

I'm feeling myself rapidly going downhill, since the autumn, and even with two full weeks off over Christmas and New Year.  I'm getting every little thing going, in terms of bugs (spent this weekend with my insides trying to be outsides) and stuff, I'm permanently shattered but often too tired or in too much pain to sleep.  I've started using Martha because my balance is shot to pieces and I keep finding myself on my bum in all manner of places (including the Tesco spirits aisle...when entirely sober).

All I do is go to work and come home again to crash on the sofa.  Oh, and go to supermarkets and my slimming club once a week.  I don't have the energy to do anything else. 

Would it be terrible if I stopped working?  I know that, at least temporarily (and if I just went off sick for the time being rather than resigned straight away) I could afford to meet my outgoings (SSP, PHI, DLA and WTC) but wouldn't have much spare for shoes or stuff, but I also don't have any savings - or any debts (I went bankrupt in July last year), so as long as I get in enough to pay for the essentials (rent/bills/food and car payments). 

I know that I *could* carry on working for a while longer.  But I'm not sure whether the (purely financial, because the pleasure of working was eclipsed by pain and fatigue etc a while ago) gain is worth it?  I kinda feel that I'm not doing myself any good by soldiering on - but if I stop will I be able to start again? 

Fuck fuck fuck fuckity fuck

Oooh, I haven't watched 4 Weddings in a while.  Must check out when it's next on TV.  My overriding memory of that film is that it was where me and Nasty Al (who is actually quite pleasant now!) went on our first date.  That being despite us bumping rudies the week before.

Anyway.

Had appointment with ME Consultant this morning, to reassess pain and painkillers etc.  Managed to get a parking space in the NEAR car park.  Only took me 20 mins to walk to ward where appointment was.  It's about 100m.  Oh well, tis better than the FAR car park (about 1/2 a mile). Was a v productive meeting.  I even came out with an extra diagnosis...it is now confirmed that I have fibromyalgia as well as the CFS/ME.  So now I have:

• CFS/ME
• Fibromyalgia
• Bipolar (hormonally affected)
• Asthma
• Migraines (stress or hormonally affected)
• "some" joint hypermobility

Just give me a fucking medical encyclopedia and be done with it, OK.

She's going to discuss painkilling options with the rest of the team to get a holistic view and then send me and GP a letter with them in.  She said I need to rest more, and do less.  Which, bearing in mind I don't do much other than work, she confirmed as I need to look into working less.

I know I do, I just really actually like my job*

And then I had to go to work.  Traffic was hideous, just because it was raining all the cycle mafia (who usually shout at me for being in my car) were obviously driving, because the roads have been screwed all day.

Got to work, started on the project that I was allocated before Christmas but couldn't manage doing because of lack of spoons.  Did the first bit last week, now was doing the "tweaking" which was taking longer and more thinking than I wanted it to.  Oh well.

I've previously told HR on multiple occasions that I'm not well enough, able or willing to work for The Alcoholic Partner.  Just thinking about having to be his secretary makes me so stressed, and stress makes me hurt. 

So today I was doing the tweaking, and TAP came over to get me to do something.  I was uber-polite and told him I couldn't do what he wanted.  To say the toys came out of the pram is an understatement.  He said that everything he's asked me to do I'm either too busy (well, duh) or not there (well, I can't help that, can I?).  I tried to explain what I was doing, and he said that his stuff took priority because I was there to provide seccy assistance to him and the other two lawyers.  I said I wasn't, I'd told HR I couldn't and wouldn't and wasn't able to.

He started stropping and then walked away (to phone HR, I discovered later).  I sat there trying to stop myself crying and composed an email to HR (which I blind copied to Boo, for safe keeping!). 

HR came back over two hours later, I phoned them back, and they basically said that they'd read my email and that there was nothing they could do, I had to basically suck it up, the alternative I'd suggested was "not envisaged in the secretarial plan" so basically I could like it or lump it.

I'm meeting with them on Thursday to update them from my hospital appointment, and to discuss this situation.  But all I want to do is never go back again.  I want to take time for me and get better. 

Why am I struggling on, causing myself more pain and more stress etc when they're just being arseholes to me?  It's not as if they appreciate anything that I do?  I can do more in a 60% week (and only working at 50% capacity when I'm there) than anyone else - but does that matter?

No.

All that matters to them is that I'm AWKWARD.  I've been described as a "heartsink". 

Oh well.

Just pay me off then.  I'll sign the Compromise Agreement.  I won't sue you for repeated disability discrimination.  I'll go nicely. 

But will they do that?  Or will I have to fight every single step of the way...

I wonder...

*well, until today that is.

One month before hearbreak

(and my birthday).

It's going to be great.  The government are going to tell me they're going to condemn me on my bloody birthday.  Well, I suppose it's got to be on somebody's birthday, but why mine?

So.  I'm not as political as others (although I've voted every time I've been eligible).  I'm not as erudite (but hey, I can spell it!).  I'm not as active.  But I count.  I count as much as anyone.  But not to this government.  According to this government I'm some kind of meta-person.  If I was cute and small and had (eg) cancer then I'd get sympathy and people running round raising money for me.  But I'm not. 

I'm me.

I've had my bipolar diagnosis for nearly a decade and it was at this point two years ago I was coming to the end of the viral crisis that caused my ME, by overloading my immune system to the point that it said "enough is enough" and is currently still lying on the floor of the Numbskulls office throwing a tantrum.

And during all that time I've worked.  I've paid tax.  I've contributed to society.  I've been a (relatively) responsible person.  I don't drop litter (because "A Guide leaves nothing behind except her smile").  I insure my car - even though the fine for not having insurance is always considerably less than the cost of insuring the damn thing in the first place.  I hold doors open for people.  I give seats on buses to those less able than me.

Yes, I get DLA.  And because I get DLA, and work over 16 hours a week, I get Working Tax Credits. 

But that might all change in the future. 

Boo has the potential opportunity of a lifetime coming up - a wonderful job in one of her industry's leading lights.  And I SO want her to take it.  But it's in London.  So she'd have to move.

Which would mean I don't get my support.  I can't write down everything that Boo does for me here - normally it takes a whole DLA form to get it across.  She makes sure I have clean clothes to wear - and on occasions (which are becoming more frequent unfortunately) she helps me get into them.  She makes sure I have a clean body - helping me in and out of the bath; rinsing my hair when I run out of energy with shampoo running in my eyes - she's even shaved my legs for me before when I just couldn't manage.  She makes sure I eat properly - when she's here I have the ability to cook, because I KNOW that if I can't lift a pan, or forget that I've started something, or just collapse halfway through, she can take over; when she's not here I just eat fruit or chocolate or microwave meals.  She does the tidying and the cleaning and the washing up.

And all of this means I can manage to work - and work part time, too, because of the DLA and WTC.  If Boo wasn't here - or I lost the DLA and WTC, then I'd have to go full time to be able to afford to pay my bills.  And if I was working full time, then I wouldn't have the energy to keep the house in a fit state.  And then I'd start being ill: having to take time off work here and there because I am not well enough to work full time.  And as I only get ten days' paid sick leave, I'd only get SSP - if it was a time when I had more than three days off in a row.  In the past, there's been a couple of occasions when I have a week or two at a time, but because of the nature of my disabilities (and the work ethic my mother instilled into me!), it's more likely to be a day here and two days there.  So I wouldn't get paid for it.

And of course, this would mean I lost my job. 

And then I'd be ENTIRELY dependant on state benefits. 

Because of a short-term decision decision by people who should know better, I'd go from being a contributing member of society, to being someone who is entirely dependant on handouts.  I'd go from being able to look after myself (admittedly with support from my best mate) to having to depend on the kindness of strangers. 

Which seems better to you?  I know which option I'd choose - but am I biased because it's me that would be affected? 

My political mantra is quite a simple one, stolen in part from Ken Clarke back in the 80s..."equitable taxation with responsible social welfare".  But I have a small hankering for real communism: From each according to his ability; to each according to his needs.  I have NO problem paying taxes.  I have NO problem working.  But I do have a problem when the government is coming after ME when it'd be more effective to either ask Philip Green or Vodafone to pay their taxes; or work more efficiently across departments; or IMPLEMENT A SYSTEM OF PUBLIC WORKS.

I've thought this for ages.  I even tried playing with that government budget thing that let you do it your way.  But it didn't work properly.

What I'd do to kickstart the economy is:

Start building (or repairing/renewing the ones we have now) roads, prisons, hospitals, schools.  Yes, it's an initial outlay but we'd have to start employing people to do it.  At all levels, from construction workers to finance staff, administrators etc, to architects.  And when they're built - more doctors, teachers, nurses, prison officers.  And the people who did the building would either transfer to the next project, or would work on repairs etc.  Like the Forth Bridge.  Once we'd completed it, there'd be things need repairing, or new projects.

And all these people would be being paid rather than taking benefits.  So they'd be paying tax.  But there'd be more money generally, they'd be spending and saving and activating the economy in areas OTHER THAN those directly affected.

If I can see this - why can't anyone else?  Is it that stupid an idea??? 

OW OW OW

That is all...

So much pain today.  Slept badly.  Except when it was time to wake up and take tablets.  Slept through that, even though I'd set an alarm.  So woke up at midday in pain. 

Boo is being a darling still, she's got a right cleaning and sorting head on her.  Bedrooms have been turned round, washing fairy is visiting, and best of all, she put my bra on me today.  Could not manage to do it myself. 

Went to Morrisons to get food with Pink Martha, we've got seriously nothing in.  Except frozen vegetables, that is.  Haven't even got mince in the freezer.  Not like me.  I'm a hoarder - take after Aunty Anne in that respect.

Couldn't do much due to pain, had to get a trolley for a basket-worth of shopping just so I could lean on it :o( but does mean that we've now got noms in for the next three days).  Hopefully by then the pain levels will be down a bit so I can manage to get some stuff in. 

Missing the Beardy One.  He made my stomach flip last night - sent me a FB message and all it said was "I love you".  It's amazing how three little words can brighten your whole life...

But still...pain.  If someone asked me where hurt most, I honestly couldn't answer.  Every part of me is screaming, despite max levels of tramadol.  Can't wait to see consultant in a couple of weeks, hopefully something will be done.

and one becomes three

Martha now has two sisters.  She has black sister and pink flowery sister, both folding.  Black Martha came from eBay, pink Martha came from an old schoolfriend.  If I was at all technologically ept* I'd post photos.  But I'm not.  I can type at 100 wpm, and am a whizz with word (and words) but I can't do "techy" stuff.  That's what I've got Boo for.

I am very ranty though, got one of those inate feelings of unease.  Normally at this point on a Saturday night I'd be wanting to take the Beardy One off to bed, but right now he's at his "other" house - digs near Uni where he's training to be a teacher.  So I haven't even got him to take my mind off everything.

Work is being a pain.  I generally (and genuinely, despite all protestations) love my job, that's why I've been doing it for a decade.  I love being the one in the background, organising someone, making sure they have everything they need.  But I cannot cope with the thought of doing this for The Alcoholic Partner.  I just know that my mental stability and physical health are in too fragile a state right now for me to have to argue about this with The Powers That Be.

They've GOT to know (and yes, I've told them) that I'm not able to handle this job properly.  Are they making me do it so they can get rid of me? 

I'm scared too.  Scared that this period of relative mental stability is coming to an end.  I've been unmedicated (for the bipolar) for just over a year now and haven't felt like this for ages - even before I stopped the meds.  My brain just WON'T stop.  And not in a good way.  The stress is getting to me and I just want to curl up in a little ball and hide away from everyone. 

I'm annoyed.  The Boy and I *know* we're going to get married.  We've discussed dates - July/August 2012, venue - I'm allowed to request brochures etc.  But we're not engaged?  And why?  Because he wants it to be "his idea".  I just want to get on with spending the rest of my life with him.

I'm in pain.  Despite all the bloody painkillers, because I'm not sleeping properly, my pain levels are high and my threshold is low.  And it's getting to the point where moving, in any way, hurts so much that I'm scared to try to do stuff. 

But most of all...I'm me. And me copes.  So I'll cope.  Until I can't any more.  But what then?

*what?  Isn't it obviously the opposite of inept?

In the beginning...

Was the word.  And the word was "diachronic"

Much as I've been reading many blogs for a very long time, this is the first time I've got round to writing one myself.  And I suppose the purpose of a first post is so that you know who I am.  Except that I presume that (a) no one's reading this anyway and (b) if there is someone reading this, you already know me.  But I'm going to tell you anyway.

I'm me.  And me is:

• 30 something
• female
• living in Bristol (but not Bristolian, thank god!)
• living with best mate and two wonderful kittehs, Splodge and Nev
• in a relationship with a wonderful bloke
• a part-time legal secretary
• pedantic about spelling, grammar and the lack of it from some people
• trying to get by in the world with bipolar and ME...

And that's about it really.