Summer is well and truly here, and as such I have lavender in pots in the hope of helping out the bees we need, and a beautiful hanging basket, and the garden has been trimmed and tidied. And it's looking pretty lush. Which is good, because The Little Man likes to play jungle, and now his pathways are clear to do exploring, AND the whole family is descending tomorrow. Best make sure the paddling pool is ready then.

I love getting out in the garden, but sadly I need help now to do so. The garden is sloped. Not much, but enough for a wheelchair user. And I LOATHE being pushed. So anyway, The Good Man came back from work, with some ramps, so I could access the garden by myself. BONUS! And I have done! Brilliant!

And then…..a friend came over, so we went in the garden. Paddling pool, Little Man, ramps. Let's go!
I don't know what happened, because I have used the ramps countless times, but ……..I tipped back and BANG! went my head, elbows and my back between the shoulder blades. Christ on a bike…..it bloody hurt! And my poor friend could see it all happening, probably in slow motion, so she ran down to where I lay, with my knickers on show, feeling very winded and like the back of my head had caved in.

So, fast forward to the next day, and my head and elbows feel better. However, the same cannot be said for my back and neck.

The sun is still doing it's thing, so I tried again today…..SUCCESS!

However, summer, and the sun, is a double edged sword for those with MS. The sun gives you vitamin D, which is excellent, and helps your body regulate the immune response, so helping to reduce your relapse rate, but keeping cool is paramount, due to something called Uhthoff's phenomenon. This sees a worsening of symptoms, due to your core body temperature rising by as little as 1/4 of a degree, and in me, presents itself as a boneless lump, sort of a mess really. Well, that's just shyte then.

Best go and get sorted for tomorrow. There's shopping to be done and family to feed.

Congratulations to Sally and James……..

Yesterday, I went to a wedding. The couple getting married had been at university with The Good Man, and I had met the bride, just the once. Preparations had been undertaken, in the form of shoes and the loveliest dress, and this was done in plenty of time, leaving me shed loads of time to have my customary breakdown.

Anyone that knows me, will tell you that I am accessory queen. I have been raided in the past, by friends and daughters, who are looking for that perfect necklace/bangle/hair clip/scarf/shoes/bag/nail varnish to go with an outfit. My wheelchair…..an accessory, it is not. And no-one is queuing up to borrow it. Despite that, and despite myself, I have to say I do love it. It enables me, mostly, to get around.

The wedding was in an old church, next to the vicarage, and this is where the reception was being held. And it was BEAUTIFUL. I found myself just looking at my surroundings. I was left silent, and just looking, and watching. Stunning. There was a marquee in the garden, and this held it's own, just, whilst fighting an almighty storm. The storm cleared, and food was had before we descended on the garden, sitting on bales around fire pits.

I get nervous meeting new people, especially in groups, but really, again, there was no need. I am an idiot. The vicar even had a ramp, and this also helped. And where the ramp was needed, but couldn't be used, there were people willing, and happy to help. The fact that they were mostly marine boys, offering to carry me, didn't really register. AT ALL ;) And nor did your knee in my back, Mr Fox ;)

People offered to help, and asked if I needed anything. And however I responded……No thanks…….Yes please, could you just blah blah blah…….was fine. And that, was a joy. And quite a rare joy. At social gatherings, there is usually at least one person, who seems intent on forcefully trying to make me realise that I don't know what's best for me. Well, I am the boss of me, and I am not here to make people feel better because they helped the poor disabled girl.


Sometimes in life there are moments, that pathetic fallacy comes in to play. Often you won't realise it until you reflect back, and when I got home I realised that my emotions very much matched the turbulent storm. Feeling sad/angry about being in a wheelchair, excited to be dressed up in that gorgeous dress, and spending quality time with The Good Man's friends, tired (always tired), and most of all anxious. However, as we all know, weather changes, it develops and sometimes it can develop into something beautiful. Last night my view was of a peaceful and beautiful lake and it could only be described as serene. And that's how I felt. My two youngest girls at home (getting along... what?) while the little man slept, The Good Man by my side but chatting and doing his own thing, and me, feeling human again.

click on the pictures to enlarge them, to see the true beauty

I'd like to wish Sally and James a beautiful lifetime together, and offer my congratulations on an excellent day. You kicked off your life as Mr and Mrs in a relaxed and seemingly effortless and beautiful style. Long may it continue.

Yesterday saw my village getting together for the annual get together on the green. There was a band playing, and a marquee called The Pudding Tent, where most people donate some kind of pudding thing for everyone to dig into. People turn up with picnics and drinks, or use the local pub that faces on to the green, for refreshments. It's always a good event, so I decided (after a few years absence) that I would go along.
And man, it was busy! I went down with my daughter who was helping out at the pub for the night, and as I live at the top of the street that joins the green, I thought, 'Perfect! I'll just go down in my wheelchair. It'll be fine.' Fine it was not. My daughter had to jog to keep up, and I had underestimated how steep it was, and just how many potholes there were. Still, I had time to think about my decision when I hit a kerb at speed, nearly flew out of my chair, whilst being serenaded by my daughters shrieking.

Anyway, I got to the green and was met by some kids who had seen my descent, and decided, on their bikes and scooters, to challenge me to a race. I was up for that, but sadly I was left eating their dust, as they left me standing. Or rather, sitting.

I saw several groups of people that I knew, and have known for a loooong time, since before I had to accommodate MS, so it was good to see them and chat about any old thing.

And of course, it was a perfect place to do a wheelchair challenge! I gave up my wheels in favour of a  garden chair and the games commenced! I thought I'd go easy on them, when I set the route, so I  decided they should just go up the slightly battered road and back. At first glance, EASY! No grass, no kerbs, not very far. However, the first contestant revealed it to be trickier than it looked. People seemed to find it incredibly difficult to even go in a straight line…..one person turned around, so they were backwards and a bit stuck. The winner was declared, but as a man who does The Iron Man thingy it may have been too easy for him, but he assured me it was difficult, much harder than he'd thought it would be. His daughter, (6 1/2) put me through my paces too, as she was asking questions. 'Why do you use a wheelchair?' 'What's wrong with your legs?' 'But I saw you stand up. Why can you stand up, but not walk?'

I was set my own challenge when I needed a wee. I had to go in the back of the pub but luckily, the tradesman entrance was right by the mens loo…..that'll do….. I'm not fussed, especially as a man checked it was empty, and then kept guard for me…..I came out to find a queue of men, who were looking a bit confused.

I had another challenge getting home. My friend came with me, and thank goodness he did, I HATE BEING PUSHED, but I could not have got home without his help. Especially as there are five steps to get to my front door and a path too, I can honestly say I have never found it SO bloody difficult. Normally, I can do it with the help of crutches and a hand rail, but last night both feet seemed stuck to the floor, and my legs were reluctant to bend, so this made the steps bloody hard work. Thank goodness for my friend again! The good man had stayed home with the little man, and I can definitely say there's no place like home.

But apparently, my home is fine for me, according to the local authority, who, apart from the hand rail, and the offer of a stair lift inside (that was then withdrawn), refuse to accept I need help. Surely I should be able to get in and out on my own? And access all of my home? And garden? Well, I can't. Do you call that fine? Aren't I just a bloody demanding diva?

That's what I call a challenge.

So it's the middle of the night here (3.45am) and whilst the rest of the house is sleeping, I AM NOT. So I toss and turn thinking about the day. I went out with the little man, and we were chauffeured by one of my girls. She was most excited as she hadn't witnessed me using a mobility scooter before, but I was less thrilled. I still can't really get my head round it.

Still, get my head round it I must, as it's one of my girl's birthdays soon, and that was the reason for the shopping trip…..there are presents to be found. And my driver is heading off on a girls holiday soon, so I got her a dress for that. I gave her a choice…….dress or fuel?….dress or fuel? It somehow ended up dress AND fuel. Mission completed, we head for home.

I also had friends visiting for the evening. One had knackered her shoulder so I gave her some reflexology, and that really helped. BOOM! I felt dead chuffed with that. Seeing friends is wicked, but it can also leave me feeling like I am left behind from the real world, so to help someone out, also helps me out, because I feel like I have something to offer, and that feels good, y'know?

When I was tucked up in bed, WIDE AWAKE, I spent an hour or so on Rightmove. I was looking at houses in my price range, but stupidly, at ones in Cornwall. I'm an idiot. I love Cornwall, but sadly, I can't move 4 girls and their lives too, so Cornwall will have to wait. They can leave me for their own adventures, but I won't leave them.  Not even for Cornwall……...and it's beaches, and it's icecream/chip stealing sea gulls/the Tate Modern/all year round flip flops…..well, maybe I could be persuaded……..the girls can always visit, it'd be just like a holiday home for them ;)
Cornwall is a bit of an oddity as far as ms is concerned. Globally, the further away from the equator, the higher the incidence of ms. In this country, Scotland runs true to form with this statistic, but Cornwall is the closer to the equator, but the incidence is really high. It doesn't make sense, but I'm sure, in time it will be understood. I reckon the Cornish peeps are chuffed, something to keep us Northern types away, and stop us from eating all their ice-cream and scones, and taking over their beaches.

The little man has nursery tomorrow, so I can catch up on sleep then. There is a bird nattering away and annoyingly twanging the aerial just above my bedroom, but, in spite of that, I'll give sleep another chance…...

In my last post I said that I need to get on with practicing my driving. The Good Man and I went to pick up an Indian take away and I DROVE!! ALL THE WAY THERE AND BACK!! The fact that I was grimacing for the whole journey, we can overlook. It's so tricky, if you ever get the opportunity to drive an adapted car, take it, and you'll see what I mean! Still, I did it…..BOOM! GO ME!!

For those of you wondering how my car may be adapted, I have a lever that accelerates and brakes, and this lever also has a control for the indicators. I have a choice of attachments for the steering wheel and this is uncomfortable to hold (often leaving me feeling like I have little control - sort of like I'm one step removed from driving).

It feels as if I'm trying to learn to drive again, and I'm fighting against years of driving the conventional way, and the adapted way feels unnatural. My friend who taught my daughter to drive and is preparing to teach my next daughter to drive (good luck) is coming over to accompany me in driving again and to cheer me on, and hold my hand, and I can't wait.

I've broken the back of driving…..next challenge….taking the little man to a park……
Wish us luck!

Following on from my previous post, I want to say a big thank you to my girl for that crumble, it was delicious, as was the bolognaise she made the next night. So it's fair to say, that as I write this post, I'm feeling fat and happy.

Happy. That's a funny one. I have so much to be thankful for, that makes me truly happy, but sometimes, I feel overwhelmed with loss. The biggest loss, that's had the biggest impact, is the loss of walking. This means a myriad of other losses…..

A, Walking along whilst holding hands with the good man, or the little man. My hands are either taken up with crutches or with the wheelchair.

B, Umbrellas. Seriously. What a thing to miss! My hands are always busy, (see A), hat hair it is then. Could be worse I suppose……I look ok in a beret, but most hats are too big for my pin head.

C, Not being able to take the little man in the garden, or down to the park (both are inaccessible). This really gets me, as he is such an outdoor boy.

D, Midwifery. I loved this, but you can't deliver babies whilst in a wheelchair/on crutches. I got into my second year of training, was diagnosed in my first…..that's how quick my descent has been. I would initially walk the corridors (yes, WALK) and I'd be literally bouncing off the walls, like I was drunk.

E, Driving. The loss of this ability makes the world SOOOOO small. And it doesn't make sense to me, the car is adapted……why can't I do it? Writing this has made me determined to try……AGAIN……Driving an adapted car is very different to how you drive 'normally'. Bravery AND practice needed.

F, Independence. I have gone from being very independent to being so dependent. E has something to do with this……so I best get on with practicing my driving then….

I'll let you know how it goes….. 

Yesterday, after the rain had done it's thing, was a good day. All of my family were here, except for the good man, and we were able to get in the garden. I sat on the door step and watched as they messed about…..rides in the wheelbarrow, kicking a ball about and eating ice-cream.

The little man is a real outdoor boy, so to see him running around is just great, his fat little feet in sandals, and he thinks the soil in the plant pots is the best thing EVER. He even manages to get the soil in his nappy…..bath time needed tonight then.

The good man got back from work earlier than expected too, which was a BONUS.

Today is the complete opposite. I'm alone in the house. And it's odd.

One weekend. A game of two halves. Polar opposites. A bit like my life. The 'used to be' life v's 'how it is now' life.

And the silence is broken…..one phone call and one text within minute of each other alert me to four people descending any minute now. And so we begin a re run of yesterday.

So anyway, what I am trying to say is make the most of what you have, whilst you have it. I did not make the most of my mobility when I had it. Well, it's rather that I took it for granted. I suspect most people do. My advice is, don't.

Now please excuse me, as there's strawberries to look at, and one of my girls has a new boyfriend to introduce. And one girl is pulling rhubarb to make a crumble, and I need to give instructions if she hopes for an edible pudding.

P.s….The boyfriend, by the way, got the thumbs up from me.