Glass half-empty? Or full of shit?

Imagine if you will, that you arrive home one day to discover your house has been burgled. Half of your life’s belongings, ranging from the valuable to the priceless have been taken.
I’m willing to bet that most people’s reactions would be “For fuck’s sake! I can’t believe the thieving bastards have stolen half of my stuff!”and not “Oh well…at least they only took half of my stuff”
I don’t think that is anything to do with whether or not you’re a so-called optimist or pessimist. I think it’s just human nature.
Maybe later, weeks down the line you may get to a point where you think “Well, it could be worse, at least they didn’t take my cat / glasses / signed copy of my favourite book / whatever” but most normal people need a period of disbelief, of shock, horror, grief and anger first.
If the morning after you were burgled, a well-meaning friend or neighbour suggested you were lucky, and encouraged you to look on the bright side, you’d probably be less inclined to agree with them than to punch them in the face. Or maybe that’s just me?
This is relevant why? Well because it provides a good analogy for my life at the moment.
Only rather than coming home to a ransacked house, I woke up one morning in a body that no longer operated as it should. And as I struggle through each day, trying to continue with life as best as I can with limited functioning and mobility people keep telling me “It could be worse”.
This is a moronic statement, akin to “smile, it might never happen”. Yes of course it could be worse. There are not many situations that are so bad they couldn’t possibly be worsened in some way. But let’s be honest, if you’re telling someone “It could be worse” then it could probably also be a lot better.
I can think of hundreds upon thousands of things that I’m sure are so much worse than having Guillain Barre Syndrome that they’re incomparable. Does that mean I should feel delighted in some way that my situation is only as bad as it is?
Or perhaps, am I allowed to feel sad, scared, and down right pissed off?Am I grateful I didn’t end up ventilated on ICU? Of course! Am I devastated that this has even happened to me in the first place? Damn right I am!

It would probably be easier for me to “look on the bright side” if I could dress or undress myself without assistance. If I could pick up my own children. If I had made any progress at all since being discharged from hospital over 4 weeks ago. If I’d had even a glimmer of a hint of improvement or recovery. Maybe when getting up from a sitting position doesn’t take every ounce of effort and energy I can muster, maybe I will have some leftover for “counting myself lucky”.
Until then you’ll have to excuse me if I continue to have moments of panic, terror, depression and fury. You see my glass is neither half empty nor half full. I’m just human.

Having it ALL. In a house.

We’re deep into house hunting mode and I can’t see the wood for the trees. Street names, floorplans and school catchment areas are flying around my head as I type this.

We’ve viewed three houses so far this week, which given we only found out we had to move on Saturday night is not bad going. Alas none of the three have been perfect. You see, in fact there is no such thing as the perfect house. Unless you have a limitless budget, in which case the (real estate) world is your lobster (to quote one of my nursing tutors there, I love it when phrases go awry). Sadly our budget is indeed strictly limited, so our quest to find the right size house in the right area that ticks all our boxes continues.

They say you can’t have it all, and when it comes to houses you definitely can’t. Ideally we’d like to stay in this area, but we also need a decent amount of living space and because I feel shitty that the boys are having to move again (this will be Toby’s 3rd move and he isn’t even 4 yet) I would really like them to gain something from it, compensation if you will, in the form of a garden with real grass, or a bigger bedroom, or a playroom to replace the one they have here.  But to get all that we’d need about twice as much money as we actually have OR we have to look at other areas.  See it really is impossible to have it all.

Especially, it turns out, if you also have pets. Just the word itself is enough to cause a visible shudder in an otherwise perfectly composed letting agent. Today I was told by once such agent that “Pets and renting don’t mix I’m afraid!”

As though that nugget of wisdom from her was going to revolutionise my world view to the extent I’d be prepared to book my dog in for the next available euthanasia appointment.

I have been a tenant for the past 12 years and for the last 8 of those I’ve had a cat and the last 7 I’ve had a dog. In those 12 years I have lived in 2 flats and 4 houses and never once has either myself or either of my furry little companions (or indeed Chris or the kids) caused any irrepairable damage. And on only one occasion have we ever received less than our full deposit back, and that one occasion was last year when we voluntarily gave up about £80 of it to pay for a cleaner and gardener to tidy up after us because we didn’t have the time.

Still, the chances of us finding our perfect house on our limited budget are slim.  Add pets (shock, horror!) into the mix, and it just aint gonna happen!

Right now my brain is a battleground- which is more important- the right house or the right location? And what constitutes the right house, the square footage? The feel of the place? How long we’ll be able to stay there before being turfed? And what constitutes the right location? Our current area because we’re settled, or make a break and try somewhere new? And don’t even get me started on the schools issue. Having just been through the schools saga, having viewed 3 of our 5 local schools and finally decided on a favourite and applied for a place, I now find we’re in a position where we may not even live in the catchment area for it anymore in a few weeks time.

These are all questions I could have well done without pondering at the same time as dealing with my illness and disability but now find myself worrying over all hours of day and night.

If anyone has any of the answers please let me know.

 

The Flood

They say it never rains but it pours. Right now it would appear to be fucking monsoon season in my life.

I was just sitting around with my Guillain Barre and thinking, “You know what might be fun? How about we move house in the next couple of months?!”  So we are.

I am of course joking. About the first part at least. One of the shittiest things about renting rather than owning your home is of course the fact that it’s never really yours.  And thus, the people to whom it actually does belong can have it back any time they want, and that’s the position we find ourselves in right now (and the position we found ourselves in 3 years ago…and 2 years before that…)

Yep, we’ve moved a lot.  Four times since 2008 to be exact, not including this move we now have to make.  Two of those moves were our choice (moving out of a place we couldn’t afford, and then later moving out of a 2 bed place that was too small) but the other occasions have been like this one- we’d like to stay but we can’t.

To say I am devastated would be an understatement. We’ve only been here 16 months, the kids are settled and happy, we’ve just applied for a primary school place for Toby…To say that it is going to be a logistical nightmare would be even more of an understatement. I struggle to walk, or even dress myself some days. Quite how I am going to pack up our entire belongings into boxes and transport them somewhere else is entirely unclear at this point.

First things first we have to find the somewhere else…

Anyone got a spare house lying around?!

 

The Funny Thing (Part 3)

D-Day (Diagnosis Day) came on Thursday 29th August, when, armed with my Lumbar Puncture results the medical consultant informed me that it was “highly likely” I had Guillain Barre Syndrome and that they wanted to transfer me to a neurology ward at Hope Hospital where I could be observed, and if necessary, given treatment in the form of Immunoglobulins.

I called everyone who needed to know to notify them of the news and tried to prepare myself mentally for a longer stay in hospital.  Then after lunch I was seen by one of the neurology consultants from Hope, who after reviewing me, and my LP results decided that all things considered I may not need to be an inpatient after all. By that point it had been 3 weeks and 1 day since my symptoms had first presented, and I’d been stable, with no worsening of my symptoms, for a few days. He wasn’t keen to treat me with Immunoglobulins as they’re most effective if used soon after symptoms begin, and at that point were unlikely to affect my long term outcomes. He asked how I felt about going home. I could have kissed his shiny bald head but settled instead for “I’d love to” and he said I could so long as I agreed to come back if I deteriorated (obviously) and that I’d need to be seen as an outpatient in clinic in 6-8 weeks time.

So, just as they’d sorted out my transport to Hope it was cancelled and they started my discharge paperwork instead.

Coming home was surreal. Everything was the same but I wasn’t. So there I’d been, in hospital thinking I was actually doing pretty well, mobilising around my little side room and suddenly at home I discovered I could barely make it off the sofa (too low and squishy) and don’t even get me started on stairs. Bungalow living is the future, I’m telling you.

I think I cried every day of my first week back home.  Everything was so much harder compared to in hospital, and the shock of how much I’d deteriorated without knowing and how little I could really do was hard to bear.  I also couldn’t, and still to a certain extent haven’t, really come to terms with my diagnosis.  So much about my clinical presentation didn’t quite fit GBS (which is why I suppose they kept me a week before doing an LP) that when I was discharged I kept thinking “What if they’re wrong?”

In case you’re wondering, googling doesn’t come up with anything reassuring at all, the top 3 internet diagnoses for my symptoms are Multiple Sclerosis, Guillain Barre Syndrome and Parkinsons.  So out of the three I seem to have the best possible outcome (although also the rarest).

It’s now been exactly three weeks since I was discharged and just over six weeks since that morning I woke up with “a dead leg”.

In six weeks I have gone from being an independent, self-caring 28 year old, working part time, raising two young children, doing (let’s be honest) the majority of the housework, walking, driving, swimming, hell even occasionally running, to…this. The new, hopefully temporary, version of myself.

I can walk.  Not well, not fast and not very far but I can do it. I can just about dress myself, it takes time and I can’t fasten my own bra but since I rarely leave the house that isn’t as big a problem as you might think.  I can shower myself but I can’t wash, dry or straighten my own hair, or even tie it in a bobble some days. I can get in the bath but not out of it.  I can make myself a drink although I need both hands to pour the kettle and I wouldn’t exactly say it’s safe. I can make a sandwich. I can put clothes in the washing machine and take them out again.  I can just about dress my children although only if they’re co-operative (ha!) and even then it takes a while and socks are a massive challenge. I can change a nappy, just about.

I struggle with stairs. They’re a necessary part of my everyday life but also the bane of my existence. I have to have both hands free, and I have to go one step at a time. I fell down the bottom half of the stairs last week as one of my legs just randomly gave way and it was terrifying (and painful).

I can’t work (obviously) I can’t cook, or clean, or take my children out on my own. I can’t drive, or swim. I doubt I’ll ever run again.

I feel like a lot of the things that make me who I am (being a busy young Mum, working nights, getting out and about most days, being independent etc) are no longer true, in which case, what is left? Who the hell is this person who need someone to open packets for her, and wash her hair and put on her shoes?  I have no idea.

 

The funny thing that happened (Part 2)

So, where were we? Ah yes, i remember now- A&E. In total I spent 9 hours there, without so much as a drink of water or a comfortable chair. In defence of my local emergency department it was a busy bank holiday Friday afternoon and apparently my arrival with a letter had confused matters. At one stage (5 hours in) a porter arrived to accompany me to the gp referral unit, and I briefly thought things were looking up (comfy chair, jug of water, no bed but a stretcher with a sheet!) but just as quickly it turned out to be a mistake as it seems the medical consultant on call had advised my gp I should attend through A&E and be seen by the A&E doctors rather than go to the gp referral unit so just as quickly I was back in A&E again. Eventually, around 7.30 pm it was decided I would be admitted and at 9pm I found myself crying (again) this time on AMU (Acute Medical Unit). Faced with spending a night away from my boys, alone, in a hospital bed, I may have freaked out slightly. It probably didn’t help that the medical registrar who’d decided to call his consultant and have me admitted had scoffed at my suggestion that “it might be a trapped nerve?” and told me I definitely had something neurologically wrong with me. Up until that point I’d been kidding myself it wasn’t that serious. Suddenly here I was in an actual hospital bed. So I did what any sane rational person would do and resigned myself to my fate and got a good night’s sleep  had an emotional breakdown at the nurses station and threatened to discharge myself.  Fortunately, I had a lovely nurse who calmed me down and had the consultant on call come talk to me and give me a more balanced, and accurate picture and plan and I did eventually fall asleep, which is hardly a surprise since at that point I’d been awake since about 10am the day before, so about 39 hours or something ludicrous.

The following morning I was seen by a neurologist who was considering having me transferred over to another hospital with a neuro specialist centre and access to an MRI scanner over the weekend but since I didn’t appear to be deteriorating rapidly they decided instead to keep me and do it on the Tuesday instead. I got moved from AMU to ASU (Acute Stroke Unit) at about midnight that night, which was slightly alarming but thankfully I was only a medical outlier. There I had a lovely big side room with a huge one-way window (like in interrogation rooms in the movies) and my own en suite bathroom so even though it still totally sucked to be stuck in hospital missing my boys all weekend, it sucked slightly less and at least I was getting a good night’s sleep (aside from the 2am and 6am observations that is).

Finally it was Tuesday! I had my MRI scan around 2pm and I was told in the evening that my MR Spine results were back and aside from “mild degenerative changes” it was all normal. I was a bit concerned that my MR Brain results weren’t available but I was assured that was pretty normal and that they’d probably be back in the morning. Well, the following morning they still weren’t back. The junior doctor I’d asked, asked me “Did you definitely have brain done?”  I still don’t understand how I would know the answer to that question?! I was lay completely flat on a shelf and inserted into a machine, in which I had no concept of time. It made loud noises and sometime (Maybe 30-40 minutes or so?) later I was taken out. It eventually transpired that an MR Brain and Spine had been ordered by the neurologist but for some reason when I was there radiology had only scanned my spine.

By Wednesday I had reached Pissed Off Fever Pitch. I had stewed in hospital for days awaiting this urgent MRI scan of my brain to find out what in the hell was wrong with me and now I’d found out that only my spine had been scanned. They doctors kept mentioning Guillain Barre Syndrome and lumbar punctures but the stroke consultant seemingly didn’t think it was appropriate for them to “get into” that on his ward and wanted me moving to a medical or neuro bed (of which there were none). Eventually I kicked up a fuss. Not trying to be awkward and make people’s lives difficult but sick of being speculated over and not getting any answers I told the consultant that I was considering leaving. He told me “You surely know, given your profession and your intelligence that there is something wrong here and it wouldn’t be a good idea to go home as you are”. To which I replied “I also know that if you truly thought I had Guillain Barre you would have done a lumbar puncture already!” He asked me to bear with him while he “called a colleague”. An hour later he was back, under instruction from his neurologist “friend” to do a lumbar puncture that evening and to notify him of the results once they were available.

So 6pm saw me hunched over a stack of pillows resting on a table having a ginormous needle inserted into my spine. I tried to be brave but as he put the needle in I got the most diabolical pain in my left leg, a bit like how I imagine it would feel to be shot and as he wiggled it in further it happened again, so by the time the needle was in and my CSF was dripping into the pots at an agonisingly slow pace my eyes may have been watering just a little. In the end he took it out and tried again and this time seemingly struck oil and everyone was desperately unscrewing lids off pots to catch my gushing CSF.

Afterwards I had back ache and head ache and was instructed to lie still and flat on my (sore) back for 3-4 hours. I was given 2 co-codamol (which to me, is like a bag of heroin, I’m so sensitive to codeine) so I duly obliged, dozing in and out of consciousness until I desperately needed to pee, fortunately enough time had lapsed that I was allowed to potter to my toilet rather than any less dignified toileting options.

That night was the first night I actually felt like a patient proper.  I was sore, I’d been jabbed (five times in total as after the LP my veins had seemingly retreated so it took 4 attempts to get bloods) I was in bed with a nurse call bell and I was a step closer to actually having an idea what might be wrong with me.

Alas, my wrists fail me yet again and you’ll have to wait, with baited breath (I don’t think anyone is actually reading this, I’m just amusing myself here) for the next instalment.

A funny thing happened (Part 1)

Funny odd, not funny haha. It wasn’t the least bit amusing I assure you.

So just over 5 weeks ago I woke up one morning and my left leg felt like it had gone ‘dead’. You know, like I was awake but it was still asleep? Well, I just figured I’d slept on it funny or something and got on with my day.  I noticed it was slightly weaker than usual, as though I didn’t have as much strength in my calf muscle as normal but I still managed to get on with life without it being too much of a bother. That night I noticed I had pins and needles in my toes and heel and that the sole of my foot felt numb, I guessed it was related to the weakness in some way but still wasn’t sure what was going on and although the buzzing sensation made it hard to sleep, other than that life carried on as normal for a few days. When it started to get worse rather than better, and I was walking with a limp and finding stairs difficult, I went to see a doctor. A locum at my GP practice diagnosed me with “sciatica” and sent me away with an instruction to exercise more and a prescription for some ibuprofen gel (which I didn’t bother to fill, since I had no pain or inflammation at all).

Almost immediately after that the weakness began in both my arms as well, accompanied by pins and needles in my fingers.  It was subtle at first, I noticed pushing the buggy was harder than normal, I struggled in confusion when lifting the kids in and out of their car seats.  One evening I decided to bath rather than shower and couldn’t lift a jug of water to rinse my hair, I came downstairs and complained to Chris that I was feeling weak and pathetic and he had to comb my hair for me because I didn’t have the strength to do it. I knew something wasn’t right but it wasn’t until I went to work 2 nights later that I realised how bad things had got. Once there, I realised that at home I had been adapting my every day tasks to accommodate my weakness but at work I couldn’t do that.  I struggled to open medicine bottles or tear open packets of IV fluids, I bent down to sort out an IV pump and couldn’t get back up again without grabbing on to the desk to heave myself up. My hands shook and hummed and buzzed almost constantly.  It was a busy shift with 2 admissions and I barely sat down all night. When I drove home that morning I kept missing my gears, and my left leg had a tremor so bad I had to put the hand brake on every time I paused for even a minute as I couldn’t keep it still on the clutch. On a couple of occasions I came close to crashing and for the first time, since my problems had started a fortnight before I actually felt unsafe to be behind the wheel of a car. I got home and collapsed, literally in to a chair, and felt like I would never be able to move again.

Chris suggested I go to A&E or at the very least make an emergency GP appointment, but I didn’t want to see another locum, and anyway I was adamant I had to be back at work for my 2nd shift that night so I struggled up the stairs to bed where I sat and cried, wondering what the hell was wrong with me.

I called my GP surgery and said that I understood there wouldn’t be any appointments left for that day but asked if it would be possible to at least speak to a Dr on the phone, the receptionist said that my GP would call me back at 11am. She then rang back almost immediately after I hung up to say that actually, if I could get to the surgery for 11am she would in fact see me.

My boys joined me in bed for a cuddle. I was exhausted but wired, and literally buzzing so didn’t think I’d be able to sleep. Toby offered to sing me a lullaby. Chris told me later that by the time he’d finished his rendition of “Jack and Jill” I was out like a light.

At 11am as promised I was called through to my Dr’s room, I sat down on the chair by her desk and she said “What can I do for you?” to which I burst into tears and through hiccuping sobs explained what had been going on. I should explain that my GP is brilliant and when I’d finished she simply said “That’s not right. This needs investigating” After performing a few examinations and establishing I did indeed have a significant weakness, particularly in my arms she rang the medical consultant on call at MRI and arranged for me to be seen and then sent me with a letter to A&E where the next stage of my saga began.

And as this is becoming somewhat epic and I am increasingly struggling to type I’ll have to leave it there…

Stay tuned for part 2!