Because I Can

Last year I ran the Great Manchester Run for the first time. I did it to raise funds for Findlay and Iona, and because I was looking for a new challenge (and as someone who is not a natural born runner, it definitely was!) and just because I could.
 
I managed to jog the whole course, and finished in just under 1 hour 22 minutes and vowed I’d never do it ever again.
 
Then 3 months later I was in hospital being told I had Guillain-Barre Syndrome, and then a month after that I was so ill that I wasn’t even able to wash, dress or go to the toilet by myself.
 
My days of running 10k seemed far far behind me, and although it seemed somewhat ironic and ridiculous, to need help getting off the toilet when not that long ago I’d been a fit and healthy 28 year old, I almost didn’t mind the idea of never being able to run again.  In fact, there was a lot of stuff I was willing to forgo, if only I could just have my dignity back.
 
“If I can never run again, I don’t mind, just please, let me be able to walk” I would think to myself.  Or on really bad days: “If I can never walk again, I don’t mind, just please, let me be able to at least pee and shower without assistance”.
 
Then, quite quickly, the day came when I could pee alone, could shower alone, and not long after that I could in fact walk unaided.
 
And now, several months down the line, with my new diagnosis of CIDP, I’m not quite where I was at before all this started, but I’m closer to that version of me, than the version who couldn’t lift her arm to brush her own hair, and it’s almost time for this years’ Great Manchester Run…and I think you can probably guess what I am about to say next…
 
Ok, so it may be bordering on insanity, and I can’t say for sure that I’ll be able to pull it off, but yes, I have in fact signed up to race again this year.
 
I say “race”, but I will actually be walking rather than running.  Although I have been off crutches completely now since January, I am not yet at the stage where 10k doesn’t seem that far. I remember the course well, and it really really does seem far!  But I have recently started walking Toby to nursery (and then walking back home) and doing the same to collect him from nursery too, which equates to about 6k in one day, and that’s at least once, sometimes twice a week.  I know it’s not quite the same, because I am able to rest in between, but I figure I have time between now and race day to slowly improve on my fitness and stamina…well…just under 7 weeks anyway!
 
The run is on Sunday 18th May this year, so my taking part seems especially poignant as had I not miscarried back in October my due date would have been in May (10th May by LMP but 17th May by our early scan). So since I won’t, in fact, be giving birth, I feel I should be doing something else slightly insane and incredible instead. And walking 10k for charity, in celebration of being able to use my legs and of being ALIVE seems like it fits that bill quite well.
 
So, if you’d like to show your support, you can visit my Just Giving Page, where all money raised is going to GAIN (Guillain-Barre and Associated Inflammatory Neuropathies Charity), who offer support to those with a diagnosis of GBS and CIDP.
 
Messages of support and words of encouragement are also very welcome- even if you’re just stopping by to yell “YOU’RE INSANE!” that’s fine too! 😉





(looks like I’ll need to be dusting my running shoes off)
 
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Molar Pregnancy and Me

Welcome to the second instalment in the “and me” series!  Featuring myself and my range of rare medical conditions.  Ok, I actually have just the two CIDP and Molar Pregnancy.
Well, I don’t have Molar Pregnancy, there is no having of Molar Pregnancy. But I am undergoing follow up for a Molar Pregnancy, and I know a lot of people don’t really understand what that actually means so here I am, blogging about it.
Chris and I decided to add to our family last summer, sure I’d been having a few strange little twitches in my leg but we obviously had no idea of what was about to happen, otherwise we wouldn’t have been contemplating trying for another baby.
When I say try, that’s not really the correct wording. We’re fortunate to be extremely fertile. The question is always whether the pregnancy will actually stick.
I discovered I was pregnant on August 29th, the same day I was diagnosed with having Guillain Barre Syndrome, and had all the usual doubts and fears, but an early private scan showed the teeny tiny beginnings of a baby, i.e. a blob measuring a week behind but with a clear strong heartbeat.
I’ve never had a miscarriage that followed a positive scan so I figured we were free and clear and concentrated on getting better i.e. re-learning to walk etc.
Unfortunately in this case I had definitely counted my chickens before they’d hatched. Literally. A scan at what would have been 10 weeks showed an embryo sans heartbeat. There was to be no third chicken.
Since my body is not always eager to admit it’s failings and reluctant to let go of doomed pregnancies I had to have my miscarriage medically induced.
You’d think that would be the worst of it, right? So did I. Until 3 weeks later after celebrating Toby’s birthday at Legoland, we came home to a huge thick envelope in the mail.
The histology results from the miscarriage were back and the findings were consistent with what is known as a Partial Hydatidiform Mole.
Fortunately I’d heard of the condition before, through work, otherwise I’d have been even more shocked and bewildered than I actually was.
In simple terms it means that at conception, two sperm fertilised the same egg. This should never happen, as eggs are supposed to form a protective barrier preventing a second sperm from gaining entry. So there was a glitch with my egg, and two lucky sperm got in. Unfortunately this meant that right from the beginning the pregnancy was not viable, and by viable I mean, could never have resulted in a live healthy baby at the end of it.
From the start there was an extra set of chromosomes- 69 instead of 46 (known as a triploidy). That extra genetic material causes the pregnancy to progress abnormally with the placenta outgrowing the baby. Partial molar pregnancy is a type of Gestational Trophoblastic Tumour.  Usually the condition is diagnosed at scan and the recommended treatment is an ERPC, which is surgical removal of all the pregnancy tissue. There is a risk that if any material is left behind it can embed in the uterus and develop into what is known as an invasive mole. Untreated this can lead to Choriocarcinoma.
Obviously I wasn’t diagnosed as having had a Partial Molar until weeks after my medically managed miscarriage, and not having had an ERPC at the time, meant I was at slightly increased risk of there having been some pregnancy tissue left behind.  The idea of there being this random genetic material burrowing into my uterus and possibly becoming cancerous was pretty terrifying and I definitely struggled with the diagnosis more than I did with being told I had Guillain Barre, or being told I had miscarried, or even a couple of weeks later having my GBS diagnosis changed to one of CIDP. The molar was the hardest to swallow because it seemed so fucking unfair.
All we’d wanted was another child, how had it gone so wrong that I was now being sent pamphlets about Chemotherapy?!
Fortunately, all my stress and worry and research into whether or not I would lose my hair on Methotrexate proved to be unfounded. I have been monitored via regular urine and blood samples (I send a test tube of pee to Sheffield through the post every fortnight!) in order to check that my HCG levels are reducing.  In simple terms HCG is the “Pregnancy Hormone”, so were it increasing, or even just sticking fast, then it might indicate that there was some tumour remaining and I would need further treatment. My levels started low and have continued to fall. My most recent level was 0.02. There really isn’t much more NOT PREGNANT IN ANY WAY SHAPE OR FORM! you can get!
So it’s all been pretty straightforward and next month (as of the 12th of April) I will reach the 6 Month Post Miscarriage marker and no longer need follow-up. Although were I ever to get pregnant again (regardless of at what point in the future, or the outcome of the pregnancy) I would need follow up afterwards, as it is always possible that the pregnancy hormone can “reactivate” the mole. Which sounds so sci-fi, I know.
I will finally be able to get life insurance (something I have been turned down for, due to there having been an increased chance of a cancer diagnosis these past 5 months) which will be a relief.
It also means that as of next month we will be given the “all clear” to try again, should we want to.
1 in 600 pregnancies is a Molar Pregnancy. Having already had one the risk increases to 1 in 100. Which is still pretty good odds of everything being perfectly fine, and in fact most women do go on to have successful  pregnancies and healthy babies following a molar diagnosis.
Of course most women do not also have a diagnosis of another rare and under-researched condition, like CIDP.  And that, is a whole other post in itself.

Swimming

Today I went swimming for the first time in 5 months.
The last time I went swimming was the 21st August. I was already having bizarre neurological symptoms at that point but had been told 2 days previously, by a locum GP that I simply had “sciatica” and to do more exercise. Thus, the swimming. Although truth be told, I knew deep down it wasn’t sciatica at all.
I managed 17 lengths in 30 minutes that day, when usually I’d do 20 lengths in about 20 minutes. I kept having the sensation that my limbs were simply not obeying my commands and that I might drown at any minute. Of course with hindsight I now know that’s true. Afterwards I struggled to get dressed and in the end had to walk home bra-less as I couldn’t manage to fasten it without help at that point.
Two days later I was admitted to hospital for the first time and the following week I was diagnosed with GBS, which we all know later turned out to be CIDP, the chronic version.
There aren’t many things I love, that I know I am crap at, but swimming is one of them. Swimming and singing, and maybe other things beginning with “S” too…like err….sailing perhaps?! I wouldn’t know as I’ve never tried.
I usually need to at least hold a half-hearted belief that I’m moderately good at something, to get any enjoyment out of it. Which may explain why I detest cooking and cleaning so much. For reasons unknown that is not the case with swimming though.  I can only really do breaststroke, and even then, my technique is abysmal and I’m very slow but I love it. I like that it’s just me, and the water, and that it’s a life skill that makes sense, in case you ever fall into a vast expanse of water and wish to stay alive. I have a hard time understanding sports that make no sense from an evolutionary point of view. Like golf for example.
Swimming raises my heart rate and works my muscles and all the while I feel calm and happy, although I confess other feelings surfaced when someone’s icky disembodied blue plaster floated toward my face this afternoon.
I managed 30 lengths, although admittedly it took me 45 minutes. I still don’t think that’s bad for someone who was staggering around on crutches a couple of weeks ago though. Just being able to go there and get in the pool and not drown is a massive achievement as far as I’m concerned.
Somewhere around lap 22 I started thinking about Dory from finding Nemo and it occured to me that her little song may be the simplest yet most inspirational mantra I could adopt to see me through these tricky times…
JUST KEEP SWIMMING
I’m half tempted to get it tattooed somewhere really prominent so that when the prednisolone makes me feel like shit, or fails to make any difference to my symptoms, or when I am next in hospital attached to a drip and missing my boys, it will serve as a reminder not to give up.

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.