it's the little things..

So it’s been a couple of days since I had my little cyber tantrum.  Have things improved?  Hard to say really, mentally it’s a bit of a struggle still as I’m finding it difficult to pace myself and not really liking the fact that small activities whack me out.  Yesterday I was slightly cheered by the fact that my gait has improved.  This lift in mood was further enhanced by my first trip outside for a week, where I walked round to my corner bed to how the plants were doing.  Seeing that one strawberry was turning red (just one but it’s enough) was enough to make me positively giddy!  Better than that though, I saw that my climber might be starting to flower… it’s no good asking ‘can’t I tell’ as I can’t even remember whether it’s a clematis or honeysuckle, only that it’s one or the other.  Yet I was frustrated that that was enough to knacker me out and had to give myself an inward reminder that I needed to be patient.  Not easy though as with the improvement in gait came pain and a bladder that was in two minds for most of the night.

Still, today one of hubby’s carers was kind enough to drive me to the allotment.  I’ve not been in over two weeks and whilst plenty had told me how great it was looking, some of the week’s anger spill had been about feeling trapped and not feeling part of anything…  Anyway, with the aid of a stick for stability, I walked from the flat to her car outside.  When we got to the allotment, I got out of the car and walked a similar distance to my little patch.  It was brilliant and not brilliant to see it.  People had obviously been telling the truth and I was excited to see that everything was growing the way it should, the carrots, cabbages, onions, potatoes.  Coming from the viewpoint of someone who once managed to kill a spider plant, that’s impressive.  Yet I could also see that everything needed a good weed and watering, and being in no position to do anything about it,  this frustrated me a little.

I only stayed a few minutes, and after walking back to the car, the carer drove me back.  I had been out for no more than 15 or 20 minutes, and yet was exhausted.  Now I can choose to take this in two ways.  I can be pissed off that I was exhausted so easily, or I can be thankful that I made the sensible decision to cancel today’s trip to London.  It’s no good me being angry about actually cancelling London, that bit has already been done.  In the end, after a slight dip in mood and verbal swipe at hubby and him making me some lovely lunch and a cup of tea (that merciful stuff again), I took the option of being thankful.  After all, even I can recognise that if we had gone, the day would have been a disaster!  So instead, after a good rest, I decided to do something constructive and go through the paperwork that had mounted up in the past few weeks, which also served the purpose of making the living room a lot tidier.  Now I am aware of the reasoning about why I get the urge to tidy when I feel unwell but if it makes me feel better then where’s the harm?  Hubby lent a huge hand and by teatime, despite being knackered again, we had got it done.  Carrying on with being wonderful, hubby left me with a cuppa and went off to make some tea.  As I sat there, cup in hand, surveying the neat and orderly space that we had created, something else came to mind that helped to cheer me.  I was tired but I had actually managed to get through a day without sleeping.  Now that might be strange and not seem much to smile about, but like the strawberry, it’s enough.  

Thank goodness for small mercies...

Thank goodness for small mercies.  Which would be the mercy of tea, copious amounts of the stuff so probably not that small.  And thankfully no-one reads this 'jabbering' on (apart from hubby of course, and he knows how I feel - most of the time anyway!) as even I know it's going to sound like self-indulgent whinging.  I can't believe it was April last time I wrote on here... I mean, I know I dither but not this much!  Anyway, it's fair  to say that it's all gone to shit.  So what's happened? One word (or three perhaps...).   Relapse.   M.S.  And a nasty little bleeder it's been too, much more so than usual in my opinion.  It's never nice of course but I was doing ok I guess, cruising along with the MS and life in general, feeling pretty relaxed with stuff and idly making plans.  Getting cocky wasn't I? Don't get me wrong, the MS is always there, 'gently' reminding me that it's a permanent fixture, through fatigue, spasm, tremors, pain, etc, (I think you get the idea) but I think overall I was coping.  It just goes to show how complacent I had become because at the start of May I noticed a disturbing trend but was refusing to panic just yet.  Nothing major I suppose but I was having some real trouble at night with disturbed sleep, partly with getting up for an overactive bladder (several times a night!) and partly due to burning in my legs, especially my feet.  No matter how cold I was elsewhere, the sensation in my feet was so bad that I couldn’t bear the bedcovers on them!

Anyway on Saturday 7^th May (Lincoln were playing at home and hubby had gone to watch) I walked the dog (slowly of course) to the allotment and back – it was a sunny afternoon and I thought it would be good to get some gentle exercise and fresh air.  However, I hadn’t realised how humid the day was, something that became more and more apparent as I walked back.  By the time I had returned home, I was exhausted.  My brother made me a drink and sandwich which I managed to eat, but despite a promise to do some baking with my niece that afternoon, I was soon fast asleep and ‘out of it’ for over two hours.  Even when I woke up I was quite drowsy and it took some time for me become fully aware.  I also had difficulty sitting up, the left side of my body had become distinctly uncooperative.

The next day I was still stiff and needed my stick to go outside but after a rested morning, things improved.  I still took things easy as using my hands for cooking was not a hundred percent and I struggled to grip things properly – not so great when handling sharp knives or hot pans!

Monday I can’t remember too much although I think hubby and I had been to the allotment...

Tueday I went into town with hubby to deal with post and get some groceries. Yet despite taking things at an easy pace, I really struggled on the walk home, and as it felt as lead weights had been strapped to my legs and as if I was walking against gravity.  I rested on the bed once home but still fell asleep for a lengthy period – hubby woke me up later with a cup of tea.  Looking back I can see how things were shaping up but hindsight is marvellous isn’t it?

On Wednesday morning I saw Dr Zubair.  I had been called in to discuss the referral to the pain clinic (as directed by Dr Sharrack) – slightly disturbed that Zubair didn’t know why I was there, and then questioned the referral but no matter, we got there in the end.  I also spoke to him because my heartburn problem was proving to be particularly troublesome and the meds weren’t helping.  He changed the meds back to Lansaprozole and also added Gaviscon to the mix.  Lovely, chalk juice, just what every woman wants!  He also said that he wanted to see me in 4 to 6 weeks to review how things were.  You would think that I would have mentioned something then but it didn’t occur to me that there was really anything to discuss.  However, the return home was the real problem.  Normally I would walk back without any problems but then I arrived home exhausted – I slept all afternoon so fatigue was still a big issue.

I can’t really remember Thursday or Friday.  Saturday was the FA CUP (which we won!), and Sunday was Martin’s bbq.  Hubby did say that I was not looking well at all but I can't really remember how things were on those days.  I have recorded in the main diary for Monday 16^th May that I had been suffering with bad pain in joints at night (spasticity???), particularly in lower back and knees, and was not well enough to go to the vets with Stephen and Kato.  Walking was now becoming a problem as my gait had become affected by the other issues and could only take paracetamol for the pain.

Tuesday was much the same (becoming housebound?!) but I was still in denial – I had spoken to my friend the week before about some arrangements but still didn’t really take into account how I was myself.  Wednesday I was meant to going to Liverpool with H and unfortunately because she had been ill herself she wasn’t up to it.  To be honest though, speaking with my non-deluded head on, even if she had have been I’m not sure I could have because by now the walking stick had come into play – my balance was all over the shop, I was in pain (both in joints with spasticity and neuropathic which was like burning pins and needles at any provocation, especially at night), my cognitive function seemed to be stuffed as I couldn’t concentrate on or remember anything, and the fatigue was miserable! If it looks like a relapse, smells like a relapse, feels like a relapse… you get the idea, I guess I knew then who I had to ring…

Thursday I was no better so bit the bullet so to speak and called Shannon.  My, oh my, but it had all gone to shit! I feel so bad for her, so I feel lousy for saying this but was told that she has gone off sick until the end of the year at least, so no MS support really available – apparently all patients (unless it’s a dire emergency) are being directed back to their GP’s. I was starting to feel a bit scared at this point.  Where to turn now?  Now I had an appointment with Dr Sharrack (Basil for future reference) outstanding that I had forgotten to cancel (long story, NHS bollox, not worth asking about!) – anyway, Michelle Moir, the MS co-ordinator advised me to keep the appointment as my chances of getting another if I needed to, were next to nil.  He is only at Lincoln 3 Mondays every month and Dr Bowen is leaving in June (no replacement either) so cutbacks are definitely being made.  Apparently I was still in the system for physio but God knows when that would happen… I wasn’t going to hold my breath.

Friday I went to book club (I was sick of being stuck in and in desperate need of seeing friends!) but think I overdid it big time – I only helped to mix some cake mix and my arms ached terribly the next day so weakness was definitely an issue.

Saturday not good at all as overdid it with book club and Sunday rested for most of the day.  I went to a family event but by 9 o’clock had had enough so did not stay out late.

Finally on Monday 23^rd May I saw Basil, who wasn’t best pleased at my presence but he grudgingly conceded that I had ‘probably’ relapsed and promptly prescribed a 5 day course of high dose steroids.  Luckily these were oral so didn’t have to be admitted.  The next day I spoke to Dr Zubair, who didn’t understand the dosage requirements nor the lack of difference between IV and oral.  I also spoke to rehab about any possible physio but was told I was ‘in the system’ (I have been for years) so was feeling a bit on my own with this and quite scared.  Luckily Linda (hubby’s district nurse) recorded events in my notes.  Started the steroids after testing urine (graphic I know but it’s the way it rolls in this house) to check levels (all normal).

Wednesday and Thursday were still much the same so pretty much housebound.  By now I was getting fed up, very lonely and bored.

On Friday I felt terrible, both physically and in mood (side effects – yuk!) was upset with Sally, she naturally defended her own and was dismissive of my concerns,and the actual relapse so felt very unsupported by medics.  However, late that day I had a call from Blue Maplethorpe (pain specialist nurse) who was very kind – she said that I was now in the system and even if she couldn’t help herself, she would do whatever she could.  Hubby was also brilliant, went shopping, bought flowers and fruit, cooked meals and generally offered copious amounts of TLC.  Saturday I was meant to go a much awaited life drawing class but was just not well enough so not happy about that – have to be careful though, not just with not overdoing it but with infection levels as steroids tend to batter immunity to nasties.  Sunday morning I woke up after a very rough night with constantly waking and peeing – dipped pee and it wasn’t good.  Walking was still not great but really it was the fatigue and being unable to stay mobile for long that was been getting me down.  On Sunday afternoon I stayed in the kitchen to chop some vegetables for the evening meal and overdid it again.  Just that was enough to leave me feeling very weak and shaky so needed to rest and was quite upset at how bad I felt after doing so little.  I fell asleep for quite some and was not brilliant when I woke up, yet hubby stayed just the same though, being fantastic and putting up with me being a cow despite my brain still being like a nest of vipers!

Yesterday wasn’t really any different and there seemed to be a pattern developing between vegetating in the chair, doing basic exercises learned from old physio sessions, shuffling around the flat like Mrs Overall and sleeping.  I know that it’s the sensible thing to do (in fact the only thing I can do) but to be honest I’m sick of being sensible.  In fact, I’m sick of a lot of things, sick of no taste buds (a side effect), sick of side effects in general, sick of pain, sick of having to toe the line and take it easy, sick of trying to stay positive and cheery when I feel anything but, sick of being completely isolated, sick of not seeing friends, sick of having less choices, sick of watching hubby run himself ragged and not do things ‘the way I would’, sick of medics ignoring my condition, sick of not walking my dog, sick of cancelling things I enjoy or want to do, sick of letting people down,  just sick of being sick! There is a lump in my throat where I could cry my heart out but I daren’t and I’m devastated that I’m even considering stuff that I never thought I would! Don’t be silly, I’m not talking about the final curtain or topping myself or anything like that but today hubby’s carer came to work her usual wonders and I actually found myself asking if she would push me out in my old chair (which has rotted away, happily in my view, in the shed for years) later in the week so I could gain some self respect and get my eyebrows and nails done.  What a joke that is, to go out in that heap and actually try to gain self respect!  Anyway, the Wheelchair Services guy came while she was here to do some stuff on hubby’s chair.  After seeing the pickle I’m in, my chair was brought in. However, it was quickly decided that this wasn’t going to be an option in my escape plans!  Emergency arrangements were made so that I can be taken out if necessary (and neat eyebrows are necessary, my dignity is slipping away fast enough as it is…) and it was also decided that a future appointment in clinic would be useful.  On a better note, a letter arrived telling me that a physio appointment had been made for the middle of June.  Yet I’m still struggling with all this and I know it might seem dramatic as it hasn’t been that long but I have to say that this is the shittiest I’ve been in a long while.  I don’t know what else to say except that I’m not being a complete tool.  I know that I’m lucky a friend came to visit today and listened to me whinge (I’m not sure she understands how much I appreciate her doing that but I do, really I do).  I know that it could (and probably will) work out for the best and that  I have to do my best to keep upbeat.  I know that I have to cling on to that letter I received this morning and also to give it time, it’s early days and all that, etc, etc, and I promise I am but the lump is still there.  Maybe I should let it out but I look rough enough as it without being all blotchy and snotty.  I’m not a dignified crier and at the moment, dignity seems to be a precious commodity.  Basically I’m clinging on, and with the aid of good books (Jodi Picoult is working well at the moment), Ebay, hubby’s TLC, and those cups of tea of course, I’m getting by.  Hopefully tomorrow will be a better day.  That's it.  Whinge over.  That's all I have to say.  It's time for a cup of tea.

 

 

 

Chitting and toilets...

Yesterday was the first 'official' day of going to the allotment.  I've been before of course, quite a few times to ponder and wonder (mostly at my sanity level in taking this on in my current form!), but yesterday I actually put the wellies on and got my new gardening gloves dirty.  There was no digging on my part, my official role  was weed clearer and general listener - my friend M was the digger who also needed someone to listen.  There was clearly a lot to be said and listened to, because he made an impressive job of digging and raking the soon-to-be veg patch over in a relatively short space of time. 

Even though he made great progress, there's a lot I've still got to think about.  I quickly realised as I gathered weeds, that I'm going to have to get some books out of the library and start doing some intensive research, as I know absolutely nothing and there's a huge amount of stuff to learn.

Despite my painful lack of knowledge, it was good to go and see what might be possible with the soon-to-be veg patch, and I'm thinking that raised beds might be the best thing.  I'm hoping that will make it more manageable, or less daunting at least.  I've plenty of fancy ideas about what I want to grow, but I'm thinking spuds, carrots and onions will be good choices to start with, and then to see where that takes me.  So my next task will be some intensive web-searching for vegetable seeds, particularly for some potato tubers to chit.  Being a favourite of mine, I'm keen to try  the Marfona variety as I've only ever been able to buy these spuds in Marks and they're not cheap!   M will be making said raised beds and has also been very generous with some seeds for another idea I have in mind...

The generosity and community-minded spirit is part of the appeal for starting this and already  I can see how the allotment 'community' has its reputation.  Nikki (the plot owner) came out and chatted to me about soil quality, things that have worked there before, things that haven't - no brassicas for me then...  Earlier, Joyce, an elderly lady who has the plot next to Nikki's, came over to ask if we wanted some rhubarb.  She then introduced herself and told us that if we wanted anything, we were to just ask, including the use of a toilet.  Now having an MS bladder, that's definitely a handy thing to know...

Grouchy and happy...

I believe that generally I am a happy person and that, for the most part, the glass is half full.  Lots of things make me happy, and I can find pleasure very easily with the simplest of things. Walking my dog, Kato.  Just being lucky enough to own said dog.  Listening to music on my ipod.  Leaves starting to appear on the trees in spring.  Flowers appearing, both outside and in a bunch from hubby.  Getting a bad bill then finding it's all been a terrible mistake when I ring the 'perpetrators' to protest against the 'financial atrocity'.  Orange fridges.  I could go but the list really is endless and I have to stop typing sometime (it's nearly time for bed).

All of those have happened within the last few days, so on technicalities alone, I should be giddy with joy and rapturous delight.  And of course I am, but not in an obvious way, that would get me locked up so it's all kept inside.  So why even mention it?  I don't know really, but the last post was such a whinge (which needed to be done) that I wouldn't want it to become a habit... Besides, this week has generally been good.  I've seen friends.  Watched a good film.  Kato is on the mend from last week's chest infection.  Managed to get hold of some seabass from Mark's (it really is the simplest of things...).  Hubby bought me flowers yesterday when I was feeling rubbish (those days come even on a 'good' week) and bought some of favourite fruit back for me, after going to the supermarket on his own so I could rest up.

Today was even more brilliant though. For the first time in ages, I've been able to read.   When I say read, I mean, really, really read, get my head down and in lose myself in a good book.  I've already managed some good reading this week but today was special.  Literally for hours, with the kind of concentration that produces an 'Oscar the Grouch' expression when disturbed.  I can't remember the last time I was able to indulge in one of my favourite things in such a 'selfish' way, where I could 'leave' everything around me and immerse myself in a good book.  And I have to say, there isn't much, if anything, that makes me happier than being a 'Grouch'...

You don’t have to feel unwell to want to feel better...

Physical ills are the taxes laid upon this wretched life; some are taxed higher, and some lower, but all pay something.  ~Lord Chesterfield

I seem to have developed something of a writer’s block, which is why I’ve not been on for a bit.  A daft notion really as I'm not a writer.  I started this for two reasons; to practice writing for academic purposes and to get ‘stuff’ out of my head, including the bad stuff. Yet, although I can whinge with the best of them, I’m not very tolerant of myself about complaining for the hell of it when I consider how lucky we are.  Recent posts have had a 'positive' bent about them but I don’t seem able to find that element here despite being a 'glass half full' person.  I'm not great at telling the right people how I'm really feeling but it is stupid that I can’t even tell you when it all seems shit.

My title is a proverb I picked up at yoga class last week and I suppose for someone in my situation quite a pertinent one.  Hence the yoga class in the first place.  And the diet.  And the exercise – as much as I can anyway.   So I consider that I do my bit, I pay my dues in order to feel well.  Most who know me, especially the ones who know me really well, will say I have a black humour about most things and that’s true to a greater extent – it’s how I get through stuff.  Apparently last week it wasn’t enough.  My headspace seemed to be shrouded in ‘greyness’, a murky feeling that I just couldn't seem to shake off.  I wasn’t especially ill (no more than usual…) but objects seemed heavier, walks seemed further, and everything just seemed that bit more out of reach.

The week started well enough.  The fridge got delivered which I have to admit I was a bit too excited about.  But it is orange so I consider I had just cause for the flushing of cheeks and sparkly eyes look. Then it just seemed to go down the toilet.  I went to yoga on Monday night and I can’t explain why, but nothing ‘gelled’, it just didn’t feel right.  The moves, all that I had mastered in weeks before, just felt too hard and I couldn’t coordinate myself properly or relax my mind enough to focus on the matter in hand.  But everyone can have an ‘off’ day, so no matter I thought, there’s always next week.  Except the feeling persisted, and so did the nausea of the week before.  Again I thought ‘no matter, it’ll pass’.   Tuesday I had to be up at silly o’clock, that’s six a.m. to you, as I had an appointment with the blood-sucker (phlebotomist, I’m being facetious) at the doctor’s surgery.  Anyway, I yawned my way into the bathroom, and started to take off my pj’s.  As I looked down I saw a rash, over my arms, my stomach, my chest – bloody hell I thought, what’s going on now?  Pulling myself together, I showered and sorted myself out.  I got to the doctors in good time (8.30 am) and whilst booking in, asked the receptionist if a doctor could take a look at the rash.  I should tell you that the week before, I had seen the doctor (hence the bloods) and whilst there, mentioned another rash that had been bothering me a few days earlier.  His expression was quite grave as he told me that if I had a recurrence then I was to get an urgent appointment and go back.  Back to the week in question then.  The receptionist’s response was that I could go back at 11.10 and see the locum.  Now I’m not an unreasonable woman and I’d even go so far as to say that I’m fairly easy-going with most suggestions but I did think this was a bit tight on her part.  She knew me, and my circumstances – I don’t think it would have killed her to get one of the docs to have a quick look whilst I was there.  Fixing a smile on my face, I said thank you and sat down.  Why did I do that? Why didn’t I ask a little more firmly if a doc could take a look there and then? It’s not that big an ask.  And yet I didn’t, I just accepted it, had the bloods taken and then seethed all the way home, silently grumbling to myself that I had to go back in two bloody hours!  Nothing like a bit of fatigue management… So, two hours later I trudged back, waited over half an hour, only for me to be told that the rash was nothing and just to ignore it, it would go away in it’s own good time.  Yes, I know I should be pleased and of course I’m glad it’s nothing fatal, but I couldn’t help being a tad miffed that someone couldn’t have told me the good news two hours earlier.  Wednesday was a write-off really.  I had planned to go into town and do all sorts but sometime during the night, some bugger had snuck in and nicked all my energy.  They must have, because Wednesday I had no oomph at all, and my limbs felt as if lead weights were attached.  My hubby went to the supermarket on his own and bless him, brought some flowers back to cheer me up a bit.  Now I read this quote somewhere and if I take notice, technically they should have worked.

‘At a profound level, energy from nature – or the feelings it evokes in us – helps us transform ourselves…’

Not so in this case.  They were beautiful and I appreciated the lovely thought behind them but I still couldn’t drag my arse into happy vibe zone.  Even a message from another friend about some allotment space couldn’t cheer me up.  To jog myself along, I did what I always do when I’m having a bad day and started to tidy.  If I couldn’t transform myself, then I could transform the flat and cleaning is a good skill of mine (my mother’s doing, long story).  I have no idea why I do this, but every time I have a bad phase I get the urge to tidy.  Strange I know, but everyone has his or her quirks and I guess I’m no different.  Then I discovered the crap vibe seemed to have mutated because then my friend rang to cancel cinema night as she was poorly.  Bummer all round then.  Then I got another phone call telling me that my much-procrastinated-anticipated life drawing class had been cancelled and would have to be put back until 28^th May.  I have to say that this week was shaping up to be a big pile of dog do.  But it couldn’t get any worse could it?

Wrong, it could and it did.  On Monday the nurse had said the pressure sore on hubby’s heel had taken a downturn and wanted to change his pressure mattress.  Thursday the new mattress arrived.  It was supposed to be half the bed size (king size) and if bloody only!  That night I found myself with the kind of sleeping space that meant turning over would have me falling out of bed.  Now I’m no ‘slim Jim’ but I’m not exactly a beach whale either.  When the nurse came on Friday, I think she understood why the mattress was not an improvement, and sore or no sore, it would not be staying.  

Then, just as you might be thinking that the week couldn’t get much worse, on Saturday morning the dog became unwell.  Now, anyone who knows me, even acquaintances, will say that my love for Kato is unending and unconditional.  I realise that I probably project all of my maternal energies onto him but I don’t care.  I can’t have kids, due to another of life’s kicks in the teeth (endometriosis) and consider that coping with the ordeal of a both hysterectomy and early menopause at just thirty-one to be enough of a psychological burden, so I don’t fuss about how much I love the dog or not.  So, whenever anything is wrong with him, I hate it.  I’d rather it was me and what makes it worse, he can’t tell me what’s wrong.  It’s usually guesswork and I just know from the fact he isn’t eating, or he’s not barking at passers- by, or not running around like a lunatic as per normal.  It’s fair to say that Kato is a shih tzu with a very lively and independent personality but when he’s ill it’s like the life has been zapped out of him.  Yet this time he was still eating, still chasing Tinkerbell (our aging cat), still giving it rock all when people went past the window.   Even so, he just wasn’t quite right, and had quickly developed a green-producing cough.  Hubby rang the vet and was told immediately that appointments were for emergencies only.  When he said Kato had a cough, the receptionist said that was an emergency and to bring him straight in.  Check out those massive alarm bells ringing!  When I got there, I didn’t even get to sit down in the waiting room, we were seen that quick.  After a very thorough examination, it turned out to be a chest infection (crackles on the left side – nasty).  Thirty-odd pounds lighter, we left with a hefty prescription of antibiotics and instructions to return on Tuesday, sooner if he got worse.  I have to say that I was feeling pretty pissed off myself at this point – the week had already been bad enough but this was a serious nose-dive.  Anyway, in an effort to improve the mood, hubby and I went into town to get some nice(r) groceries from Marks.  Bless him, he really tried and made huge efforts to cheer me up, suggesting shops to browse in that he would normally avoid like the plague.  My heart wasn’t in it though, so it was a complete surprise to find a gorgeous outfit (for a friend’s wedding) in Laura Ashley that had caught my eye.  Some nice groceries and one expensive purchase later, we returned home slightly cheered, only to find England had been knocked out of the cricket World Cup.  Sunday morning I woke up before my body had, so it took a while for my body to play ball and you know, let me sit up or get to the bathroom without falling over.  I think it must have been the clock change.  Or something like that.  Then my friend rang to say that she was still unwell and wouldn’t be able to come to the Pampered Chef thing or cinema.  Jeez, this week really needed to be over.  Anyway I still went to the Pampered Chef thing and despite the consultant forgetting the clock change, it turned out to be really good and helped to give me a mental lift.  I got to catch up with a friend that I hadn't seen for a couple of years, and for a couple of hours, with some good food and funny company,  I stepped out of my own ‘reality’ .  When I got back, the week had still been shit but I’m sure I returned home as a nicer wife.  I can’t explain why this week seemed worse than usual as most weeks are filled with this kind of rubbish, and can only assume that my illness had caught up with me a bit. 

Whatever, what I am certain of, is that whoever thinks that the sick or disabled don’t pay their way, couldn’t be more deluded.  Sometimes (or lots of times) despite all efforts to ‘pay our dues’ so that we can feel as well as the next person, there are times when no amount of effort or ‘tax’ is enough.  Something that might be worth considering the next time someone talks about paying their taxes to ‘fund the welfare state’…  

Sticks and stones may break my bones, but words will never hurt me...

Sifting through the week hasn’t been all bad, as the colour orange testifies. Also, as you know, on Monday I booked a life drawing class, then had a good yoga session. Tuesday, nothing much that I can remember but with my memory that's nothing new! Then Wednesday, a friend and I went to see a film called Fair Game. My friend loves her films more than anyone I know, and this year had made it her New Years Resolution to go to the cinema every week. At the time she asked me if I would like to go with her, and after some bending of my rubbery arm, and careful consideration on my part (all of one second) I said she could count me in!

I have to admit though that my motives were not completely altruistic. I feel very fortunate to have the friends that I have now, and love spending time with them, but I think it’s fair to say that I'm an introvert. I do though feel that this isn't just a personality trait from birth, that in some way, has been created from external forces, that my experiences may have helped to shape a part of my personality.

The title for this bit of jabbering is a play on words, something my mother used to say to me all the time when I was a kid. Total codswallop if you ask me, it all hurt including the names. I will concede though that words never have in themselves, if anything they've offered precious escape. I suppose I engage with the archetypal activities of an introvert, including a love of reading, as a good story can carry me away anywhere, off to different moods, times, places, and all from the luxury of my armchair. Drawing (another passion) can offer me something similar but when I was a kid, reading offered a glorious escape to whole new worlds, and what they had to offer. Every week, Saturday mornings would be spent at the library, returning what I had borrowed the previous week, then picking the next week’s selection. I’d race home, impatient to start again. Whole books would be ‘absorbed’, eagerly, too eagerly, so that by Sunday evening I’d have already used up my ‘weekly fix’. Finding me without a book in those weekend hours was about as likely as my giving up chocolate (no chance!) and in truth, stepping into those other ‘realities’ was essentially, a way of escaping my own reality.

This passion for books fostered others, drawing being one, and music being another. A life model once remarked after class that she struggled to keep a straight face if she saw me drawing because of the ‘funny faces’ I apparently pull whilst concentrating. I deny the charges. Discovering the joy of music as a young girl lead to a new love in my later teens, that of going to concerts – Simple Minds in ’89 is one that will never be forgotten, for more than just the music and it led to many more concerts/memories after. Yet reading still remains a number one passion for me and I’m not sure anything can really beat it for ‘losing one’s self’ completely. However, one of the cruelties of MS is the fatigue, a symptom that has really affected my ability for intensive reading. So, although it’s not quite the same, going to the cinema offers me stories to escape into, a similar absorption, but without the price of getting too fatigued.

True to my friend’s resolution, I think we’ve been every week. For a few hours a week we get to ‘escape to another reality’. We’ve been very lucky up to now that we haven’t seen anything bad (although Vantage Point will never be forgotten on that score, not a reality I’d ever want to be in…). Ok, some have been better than others, some not so, but nothing bad. Once again, this week we got lucky and I loved our choice. Not a new idea as such but a damning indictment on the American government! And the bonus of discovering a little appreciation for Sean Penn was most welcome, definitely an example of someone who has improved with age…

Thursday offered something similar, but with a twist. The National Theatre has been broadcasting live performances of plays around the world and the current run of Frankenstein was being shown at Lincoln on Thursday night. I was fortunate to get some tickets, very fortunate in fact as it sold out! Unfortunately H was unable to make it, though disappointed as she was at the clash of dates, at least on her part it was for an exceptional reason! Another friend that I had also asked was able to make it however, and I have to say that it was just brilliant. Dark and intense in parts, amusing in some, others were truly horrifying, whilst some were moving to the point of tears. It was another example, much like the cinema, of being able to escape elsewhere, whilst being being gripped to the edge of my seat! I think the same was true for my friend M, and what added to it was the fact we had both studied the book and surrounding concepts at university, having been on the same course.

Although it gave me an escape from reality in much the same way as books do, I can't say that my reality today is a bad one, but coping with my own health issues and dealing with my husband’s is undeniably stressful. So, for a few hours a week, whether it’s through film, theatre, concerts, yoga, drawing, or even music from my I-pod when I take the dog out, whatever I choose really, I get to lose myself and 'disappear' into another place. What's so special about this week then? I suppose this week, I got to 'escape' more than usual. Such things, with the aid of good friends, come to my rescue when my 'reality' is becoming a little too much, and all help me to smile, if not laugh, particularly when I’m ferreting around giant wheelie bins with my marigolds!

'juicy Blackpool oranges???'

Writing is not an easy task for me and it is proving quite challenging to be doing this everyday.  This isn’t because there isn’t anything to say, quite the opposite really, as I don’t live in a bubble and stuff does happen in this house.  I suppose it’s a matter of sifting through the ‘stuff’. 

Take this week for example; it really does take some sifting. First the bed snapped, ok I know technically that was last week but it’s close enough in time to still be a problem.  Well ok, it’s no real problem.  Yet.  It has snapped in three places and as one friend pointed out, the situation is precarious enough that we could find ourselves waking up in the middle of the night, on the floor if the bed collapses.  Which it could at any moment and truth be told, I’m at pains to work out how it hasn’t and how the bed is still upright.   Sure, the sides are still screwed to each end but bad visions still come to mind every time I get in bed so I’m still describing it here, the reasons for which will become clear.   I’m not panicking though, as whilst it is upright it’s still useable, so no need to crack open the purse just yet.

Then, armed with a pair of pink marigolds, plastic step stool and a walking stick, Wednesday morning found me sifting of a different kind, through an industrial sized wheelie bin, for a blow-up mattress that the carer had thrown away by mistake.  Well not by mistake exactly as it’s no longer usable (last week’s disaster, I won’t go into that here…) but as the NHS provided it, apparently they can get money back for items returned.  Or something like that. Thankfully we have some great neighbours, and the lovely man next door helped with his ‘pick-up stick’, a great little gadget for picking up litter.  Also great for getting mattresses out of bins we found.

Then the fridge started to make funny noises.  No belly laughs here, I’m talking strange.  In fact very strange, with a kind of vibrating thing going on.  Not all the time, just intermittently.  When you tell people something like that, a certain look appears on their face, like you’ve just lost the plot.  Or if the same people are in the know about the bed, then they say, “Well, there’s two of the three, just one more to go!”  Like that’s a help in any way…  Anyway, I had a look on the web as to what the fridge problem might be and frankly, the results were bad. ‘Probably the compressor’ they said, and I’m not too sure about what that is, or of its function within the fridge, but the bad bit is that any problem with this component, essentially means that it would be cheaper to buy a new fridge rather than have it fixed.   As I said, bad, particularly for the purse strings.

Anyhow, I kept to my usual form and thought to myself, ‘see how it goes, it’s probably nothing to worry about’.  Hmm, not a bad strategy till the carer arrived the next day.   Whilst she was preparing hubby’s breakfast, she asked “why is it soft?” Much hilarity and schoolboy mentality followed, to which she responded, “The butter, I’m talking about!”  Now, normally when we get the butter out of the fridge it’s like a brick and we have to leave it for a bit before we can use it.  A bit unfortunate for the purse strings, as one thing I did learn in my fridge ‘research’ is that the compressor has something to do with cooling.  Soft butter indicated my earlier worries were justified.  Drat and blast it!  It’s not all bad though, as we are now the ‘proud’ new owners of a 'juicy' orange fridge, a Blackpool fridge my husband calls it.  Please, please, let that ‘bad things come in threes’ thing be superstitious claptrap… 

What a majestic story!

Today didn’t really promise that much. I wasn’t too fussed by this but I’ve increased one of my medications, a muscle relaxant called Baclofen, as I’ve been in quite some pain over the past few weeks. My rehab doctor seems to think that the increased spasticity levels in my muscles could be the cause and suggested that I increase the dosage. Not by much, just by half of a tablet, that is, 5 measly mg. My other half can knock back these little beauties like Smarties, up to 80mg in a day and feel nothing at all. I’ve been taking this extra dose for 2 days and I’m knocked sideways! So, I got up feeling pretty wretched today and struggled to get myself going. The nausea (another gem of a side effect…) wasn’t really doing much for me and as I sat there nursing my cup of tea, I have to admit that I wasn’t in the best of moods.

Eventually the effects starting to wear off and picking myself up, I started dealing with the day’s jobs in hand. Tackling the never-ending pile of filing was the first order of the day, only for me to be interrupted by the phone. Not that I was too heartbroken about that, filing isn’t top of my favourites list. Only, one of our carers was calling to ask why her wages still hadn’t gone into her bank account. One lengthy phone call to the bank, several threats to change banks, and many more swear words besides, the issue got resolved.

After the filing finally got done, I got to writing the reply letter to the care agency that had overcharged us for mileage, yes that’s right, for mileage, which basically was telling them that credit notes would not suffice, as we would not be using their service again. Ever. Then it was the call the water company about the astronomical bill. More tedium followed but eventually it got done.

At this point, my husband had already gone off to the supermarket so, after a bit of web surfing time, I started with getting tonight’s tea on. Beef stew, and as I was using shin of beef, I needed to get cracking. I had just floured the meat when I saw my other half coming back from Morrisons. Just a few things, he had said. The box on his knee told a different story. If only the box had stayed on his knee. As I opened the outside door to let him in, the contents were spilling nicely over the pavement. So you can see how the day was panning out…

Anyway, contents picked up and ‘few bits’ put away, I got back on with the stew. Three-twenty p.m. in the oven and this beast needed three hours at least. Step-father-in-law (even harder to say, trust me) was due at five-thirty and he was always early.

Five p.m. and SFIL (I can’t type that mouthful every time!) didn’t disappoint my expectations.

Finally, at seven-twenty p.m., I settled down to eat – the beast had proved awkward and taken four hours instead. Despite having taken the trouble last year to create a ‘proper’ dining area, it's typical in our house to eat off our knees, whilst watching TV. We flicked the channels and finally settled on a programme called ‘The Wonders of the Solar System’. Anything to avoid Eastenders. But then it started to get me hooked. The presenter’s passion for what he was talking about was infectious, and suddenly we found that we really were watching, rather than just having noise on, like we usually do. Now I can’t pretend that I’ve retained anything that he said – my brain is like a sieve at the best of times, never mind on a ‘bad day’ like today. But there was one thing the presenter said that really struck a chord in me, “what a majestic story”, his description for the life and death of a star. I’m no physicist, so am not able to relay the stuff he did, but I did get that carbon, the universe, the stars, the sun, the moon, are all things that are crucial to our existence. The majority of us rarely take notice, as it’s just there, seemingly part of the everyday, the inconsequential. And yet it isn’t. Most of us concern ourselves with the humdrum, the trivial stuff, the banks, and the care agencies, the boxes on the floor. Stuff like that, whilst the real story, the big one, has been going for billions of years without too much of a mention. Relatively speaking anyway. Today was no different, I’ve relayed to you the humdrum, the petty and the trivial, largely ignoring the big one, and no doubt tomorrow will be much the same. But it has made me think, just for a little while at least, in the midst of all my 'stuff', of what’s happening out there. What a majestic story.