A lament, almost.....

A very poignant parcel arrived for me this week. Midwives up and down the UK were probably receiving the same thing.

It was an attempt by Pregnacare via the Royal College of Midwives to get Midwives to promote their products and along with loads of promotional leaflet bumpf was a very useful pair of scissors!

A nice tourniquet is always a more welcome freebie Pregnacare. Those disposable things they are making us use now are awful. Next time may be...

It served as another reminder of a career by the wayside. I'm surprised at how upset it made me really.

On a daily basis I'm quite at peace with the decisions I've had to make regarding work. There is no way I could carry on. It was dangerous quite frankly.

But, this little parcel sent me on a journey of nostalgia.

Being on call is just one of those things that you have to accept when you work in community. Going to bed with the bleep beside you hoping and praying that it doesn't go off because you're tired. Then waking every hour wondering if you've missed a bleep or whether you brought it to bed in the first place...

When it does go off it's much better to be called to a planned home birth. It's all planned out and you and the woman know how things are going to go (hopefully!). When the times right you call the second midwife on call and you both help to deliver a life in to the world, perfect!

However, things can be different when you get called to an emergency. You have no idea what you are going to until you get there. Thankfully there is always an ambulance crew there too. They get to blue light while we have to stick to the speed limit so they are always there first.

It brought to mind one call I went to that I always remember very fondly...

Bleep goes off so I ring ambulance control. Go to this address, ambulance on way.

The village I had to go to had no lighting so I was grateful that the ambulance was there, blue lights guiding me in. The adrenaline is racing for me as I have no idea what's going to greet me as I walk through the door.

A paramedic lets me in and I get upstairs. There I find a woman in the full swing of labour and I can tell just by looking at her that she's fine. An unexpected quick labour but all is well.

After all the necessary checks I examine her and she is very close to delivery. There is no time to go to hospital and this an unplanned homebirth to be.

The paramedics stay until the placenta is delivered to make sure there is no risk of bleeding but once this is confirmed it's just me, the woman, her husband and their new baby.

When I left, all three were snuggled up in bed with mum and baby breastfeeding.

I remember driving home, it was summer and at 4am the sun was just showing it's face. I got home, had a shower and crawled in to bed for a couple of hours before the kids got up, feeling very content about a good nights work. My partner stirs and says that he's really impressed and proud of what I do. Ahh....

I miss this, I miss meeting women in clinic with their second or third pregnancies. Spending time at home with them and helping them through the baby blues. Just being there..

Having HSCT isn't going to get me my career back but I'm hoping that in the future I can volunteer somewhere. I don't know, but what I have found out about myself is that there is an innate need for me to 'care' for people in some way. Even just lend a friendly ear and MS is making it impossible for me to even be a decent friend.

So once again, I'm very grateful to everybody for every little bit of help I receive.

And midwives, whether you are based in a unit or in community, never forget that you make such a difference to women everyday you work and that your words make for a good or bad experience for that family.

I know it's hard and you are run ragged with the extra pressure and paperwork consistently raining down on you from the powers that be, but you know what? I'd give anything to be in your shoes...

Still, lifes a bitch. I have to tread a new path now. I have no idea where I'm going after India so I hope that the destination is as exciting as my journey through HSCT is going to be!

Speak soon xxxx

Facebook Group

Errr....

Just that really, errr...

My mind is totally mush at the minute.

I've been without a scooter - disaster!

One of the tyres blew so Lilly and I had to limp on it to school as getting off and walking isn't an option. You wouldn't believe how difficult it is to get a scooter tyre. The local disability shop reckon it was an unusual size. This I believe was a load of rubbish, I mean it's not as if it's square. I managed to get one before they did but then we couldn't get the wheel off blah blah blah.

There is so much to do but the minute I sit down to concentrate on anything my mind just goes blank. People in the MS business call it cog fog and it's a PROPER nightmare. I can sit staring in to space for any amount of time, completely inanimate, simply reminding myself to look at the clock every now and then so I don't miss Lilly coming out of school.

My newest symptom now being welcomed to the family, back spasms.

Pain like you wouldn't believe and only on the left side of my back at the moment until the right side starts to feel left out. Over the last couple of nights they have been horrific and no amount of medication help. I just have to go to bed to lie flat. It offers slight relief.

Being on my feet and moving in anyway leads to a spasm and looking like I've got a poker you know where.

I'm being distracted by my oldest son as he's applying to join the Royal Navy. We are going through every sample test paper we can find, trying to get his speed up as the individual sections are timed. I hope it goes well, I can't wait to see him doing so many amazing things.

Anyhow, the fundraising is good. So many people getting involved up and down the country. I'm forever grateful.

There's a page on my website www.clairetoindia.co.uk which needs updating again now explaning all.

For your viewing pleasure, here's Carmel Turner talking about her HSCT procedure..

http://www.youtube.com/watch?v=FIIukhf4v3w

 Until next time xx

Humiliation....

Fundrazr - please click!!!

I haven't written a blog post for a while because I haven't been well to be honest.

It's Sunday the 17th February and I've got a bit of a sore throat. No major thing at all so I went to bed dosed up on the usual amount of Baclofen to try to reduce the night time spasms.

At 2am I came to feeling that I had a temperature, you know how you feel cold but hot and it hurts when you touch your skin.

I know what this means...

I try to move and nothing, absolutely nothing. My body from the ribs down feels as if it has been screwed to the bed. After the pain of continuous spasms begins to get to me I look over at my other half who is sleeping nicely. I really don't want to wake anybody up. So I keep trying to move. I can't even pull myself over on to my side and the pain is getting worse.

So I lay still and start to cry and yes, it's all about self pity. As the racked silent sobs became more intense (I'm painting a picture here) my thoughts turn to what happens if this is permanent? Thank God for the kids or a trip to Dignitas would be on the cards (dramatic enough?).

Paul becomes aware that I'm having a meltdown and asks whats wrong and I say - please help me. I tell him I have a temperature and as we've been through this a few times before he goes to get me some paracetamol and more Baclofen. It's a real knack taking tablets when you are flat on your back.

Once I've taken them he proceeds to massage all the solid muscles until my knees are loose enough to bend, but he can only do this by pushing them from behind and forcing the issue. 

Feeling slightly better I tried to get back to sleep as did he, but not for long. I was awake again at about 4.30am and decided to just suffer until he got up at 6am.

We went through the same procedure again and eventually he got me downstairs by me sliding on my backside. A sight to behold.

I settled in to a chair and there I stayed for 3 days.

Humiliation central!

I have a commode that I use at times like this where I really can't use my legs. The only way I could get on it was for it to be brought right in front of me. One of the older kids would pull me up and another would pull my feet until I was in the right position. Then they would go out and my youngest would stay with me pulling down my trousers. This is wrong on so many levels. Thank God it was half term and they were all around.

I kept apologising to them for being such a crap Mum but they won't hear any of it. They're so lovely.

I hope you weren't eating your dinner!

Thankfully my sister took Lilly for a couple of days, her Grandad having to come up all the way from London to get her, my Mum and sister then came for a bit. Don't know what I'd have done without them.

I'm still not great and the fatigue is sky high.

I was going to put a picture of my commode on here but the kids weren't impressed. I really can't see why..

Get me to India ASAP!!!!

If you're happy and you know it.....

This is a day in my life..

Some friends get in touch and ask us to go out for Mexican and then cocktails after. I've never been a huge fan of Mexican food but I'm happy to go for a Mojito or more. Line 'em up is what I say! I'll pay for it through the night because alcohol means medication for spasms becomes useless which seems really unfair. I'll be up all night in some form of contorsion. But it'll be worth it, I think.

The cocktails are in a different place to the meal so I think I'll just check where the meal is to see if it's accessible etc. Shock, horror! It's in a basement. Of course it is. 

So I ring my friend and tell her I can't do the meal. She feels guilty and is so apologetic. She asks me to come and they'll pull me back up the stairs. Two in front and one trying to get my knees to bend. I remind her of the embarrassing situation not so long ago where I couldn't get up TWO steps and the palaver that caused. 

OK, OK she says. But please come for the cocktails. I'm there already, I say.

Having not been to the cocktail bar before and now on the rant for disabled access, even though I know this is unrealistic for some places, I decide to check it out.

OMG!!!! It's upstairs. By now I'm crying and making ridiculous comments like my life's crap and what's the point of a life like this to my partner. 

I know my friend feels bad and she says, next time I'll check where we're going and I'm so grateful some people think of me like that but it's not what I want. If there is somewhere people want to go but I can't then it shouldn't cause feelings of guilt. It's just how it is.

It's why I draw back a bit. It's a bit of self preservation. So to those who know me, please understand, I still love you!

There are times when you have to look at your life and realise just how lucky you are. I'll admit to not being very good at doing this but when I do, I 'm so grateful. My partner has to remind me to do it sometimes. 

Have you noticed at funerals, people go around saying that life's too short and we must stay closer and then you don't hear from them for months/years on end? Well, until the next funeral anyway. So, I'm stopping and taking stock of the things I'm blessed with at the moment.

Lilly hasn't been to school for the last few days of half term. She's got chickenpox - again. Apparently you can get it twice. She likes to sneak off with my phone occasionally to listen to music, youtube etc. She'll often leave 'presents' for me. This is what she left on my phone a couple of days ago. These things make me happy - and I know it!

Please get me to India and donate if you can xxxx

I'm pleased for you - really I am...

To the lady I've spoken to recently.....

I'm a live and let live kind of a person. My feelings are, if it's working for you and it's not hurting anybody else then do what you need to do.

Who am I to inflict my opinion on you?  Although I may have a strong one. I may wheel away or put the phone down and let rip about how I think it's wrong or a bad decision but I won't tar you with my point of view. Not unless you ask me and then it's all game!


So why do you think it's alright to to do it to me? Ask me questions about it in a balanced way but don't launch at me in a frenzied attack.

If MS therapies like Tysabri are working for you then all power to you. If other drugs like Avonex and Copaxone are working for you then I'm pleased for you - really I am.

However for me, none of these drugs have worked. Still I relapsed and although being on Tysabri has stopped my relapses, still I've got worse.

I just have difficulty accepting that my only future sees me declining.

So, don't criticise me for what I'm wanting to do. I don't question your 'acceptance' of the situation. If you were progressing in the way I am may be you would feel differently. As it is, MS has little if any effect on you at all. Good for you, aren't you lucky up there in your ivory tower. Welcome to the dark side of MS.

Now if you don't like my approach then quite frankly, you can f*** off. I don't really care.

Right then, back to the pancakes, it's Shrove Tuesday!!!

For crying out loud!

Why does it have to be so painful just to get out of bed.

It took me 15 minutes this morning because every time I moved, my legs went into spasm, locked at the knees and were like concrete stumps. The thing is that once my calves start to cramp too, it begins to get very painful.

I have to keep trying until eventually they bend and allow me to move. Voila! Out of bed at last and it feels like such an achievement.

I was talking yesterday to an old friend. We were discussing the disadvantages of looking back.

It's difficult when you have a disease that's progressive to do anything other than look back because looking forward is a scary prospect.

Looking back brings memories of how I used to be. How mobile, positive and excited about life I was. I used to make so many plans, didn't achieve the majority but had fun thinking about it nonetheless. The thing is, I don't look back in a happy way, it just makes me sad at how much things have changed for me. I get so jealous when people are marching on with their lives because that's what I should be doing.

But it's not all maudlin. I have 4 very amazing children that still keep me on my on my toes (if only!).

My 16 year old brings with him all the joys of teenager hood and is doing an apprenticeship to become an aircraft mechanic. A 14 year old, a gentle soul who loves his Archery. A 12 year old daughter who thinks she's 21. She's a very keen horserider and little Lilly who is 6. She's working her way through many hobbies at the moment trying to find something that sticks!

Life in our house is all very 'normal' with the usual trials and tribulations of family dynamics.

They very definitely keep me looking forward!

And now I also have India, so there's hope....

I'm so excited about going. It's going to mean a whole new life for me. One with positivity and the ability to plan ahead in a way I can't at the moment. So, while I may get a bit lost in memories at times generally I'm feeling very positive.

PS. is it rude to slip this in www.clairetoindia.co.uk has all details needed for donations....

Ouch!

Yesterday was all about promotion and tidying up and adding to the website.

Alas that wasn't to be.

One of my symptoms is stiff muscles and muscle spasms. When I'm walking (a rare event) I have a tinman look going on. I hope you get the picture, it's not attractive.

It's crazy how you start to hanker for the things you can't have anymore. In my head I used to be this really graceful person who floated into rooms in her heels and a beautiful dress. The truth? Give me a pair of jeans and boots any day of the week.

I'd like to be able to go jogging but as my other half likes to point out "you never went jogging before, when you could have done it".

These realities don't help very much, she thinks wistfully.....

Anyway, I digress. So yesterday, I'm sat at the table in the kitchen, thinking about what to do with the website and hoping that people share my fund page, website and facebook group because that's all so important. I'd been sat for about 30 minutes and I could feel the stiffness and pain setting in so I stood up. I normally do this while holding on to the table, my muscles do their spasm thing, they settle and I sit again.

Yesterday however the spasm was so strong that it knocked me backwards and before I could grab the table to hold myself up i went backwards, smacking the base of my spine on the floor. Ouch! The problem then becomes how to get up and since I was home alone I spent a fair while on the floor before I could feel enough in my legs to move.

I don't know why I try to do this graceful, swan like delicate fall? I think I believe that by doing that I'll float to the floor like a leaf on the breeze. However, being (a bit) overweight it's a sack of potatoes or nothing.

Mind you, I did trip once close to a pole holding up a shelter. I fell, grabbed hold of it and worked that thing like any self respecting pole dancer!

So, for most of this weekend I've been sat with a hot water bottle on my lower back because it bloody hurts.

If sitting is a bit more comfortable tomorrow I'll tell you a bit more about me and my family.

So that's me signing off. Me and my unattractive tinman legs!

Mwah!