Dare I?

Okay I am going to be a little controversial here, agree or disagree, let me know.

Yesterday I watched The Midwives, BBC2 on iplayer with my Sister.

It is about midwives working in a certain part of the UK, which part I forget, however every week they cover a different aspect of midwifery. This week it happened to be about people with complicated or ‘high risk’ pregnancies, due to health problems or multiple miscarriages etc.

I was looking forward to this as I ended up having a high risk pregnancy with Beboo due to being diagnosed with MS whilst pregnant.

It was very interesting to see these ladies at work and to realise just how many high risk cases they have to look after.

One of which was a lovely lady who had kidney problems, therefore had undergone a kidney transplant a few years back. Anyway she had one little daughter but had decided to have another. Knowing the risks due to her kidney problems, she decided to put her body through one of life’s most demanding things, pregnancy.

All was fine until she got uncontrollable itching, due to her liver. It got so bad at around 20 weeks she was hospitalized, the poor woman was a mess, no sleep and constant itching all over. It hit the point where she was seriously considering terminating the pregnancy. As well as feeling sorry for this poor woman I also felt she had been a little selfish. She knew there were massive risks involved with getting pregnant again however did it anyway. To cut a long story short, her new kidney ended up giving up under the strain, so she had to go on daily dialysis. They found a medication that helped her itching and she made it past 30 weeks. Her lovely baby was born and is doing fine, she will need a new kidney but is not longer needing dialysis so often.

I understand the want to have another baby. I know she was willing to tae the risks to bring a new baby into the world, however noble this is, had she of died there would have been on little girl without a mum and if the baby survived and she hadn’t, two little girls without mummies. I cannot help but find that thought slightly selfish.

Having MS has given me no real option but to not have any more children. I know neurologists say its okay because pregnancy can stop a new attack, your existing MS symptoms often worsen. I know mine did. I was in and out of hospital and constantly away from my first daughter which I hated. Also I know the 6 month period after giving birth, MS sufferers have a very high chance of relapse. For these reasons I feel it would not be fair on my husband, girls and/or a new child in the family. So pregnancy really is a no go area for me.

It hurts to think of never having more children as my girls are incredible. There needs however, come before mine. I would much rather be here and be my version of okay, than poorly and in and out of hospital.

I know it turned out okay for her, but it could have been so-so different. Also she is now probably paying the price for it, in a way I admire her, but also I feel it was a selfish thing to do, especially as she had already been given a new kidney only to need another 5-6 years later.

What would you do if you were in her shoes?

Selfish or not?

Almost There

So today was the day of my MRI, a day I was not looking forward to.

My last MRI was the day before Christmas, last year. The hospital had lost my original referral, so my lovely ophthalmologist got my a very quick appointment at a private MRI suite. I didn’t really expect there to be much difference between private and NHS, I know this sounds stupid but I couldn’t see how they could really differ.

Boy was I wrong. The first time I was walking into the unknown at 32 weeks pregnant, this time I knew what was coming and I was petrified of doing it all again. I assumed I would be given headphones with music, but I wasn’t, I also assumed I would get a comfy pillow for my head, nope, didn’t get this either. The only thing I got this time was to have my sister in with me during the scan. She held my legs so I knew she was there, was lovely not to feel so alone.

This time I had to have dye, I though this would be a simple injection, but no. No this would be through a cannula, not an issue for most, but if you read my blog you will know I have horrendous veins. Therefore most of my appointment time was taken up trying to find a vein. Its not the needle or pain that bothers me, its the poking about under the skin, trying to catch that vein, ergh makes my stomach turn.

After getting a purple arm and lots of pumping later they finally found a vein. Phew.

When the cage was placed on my head and I was passed into the tunnel (the very narrow tunnel) all the feelings of worry came back. The feelings of being alone. The realisation that I was in that machine because I have a neurological condition, I have brain problems. Its on of those things you never thought would happen to you. It has happened to me.

Having my sister the squeezing made me relax, gave me the confidence to see it through.

Now I continue my MS journey in limbo land until I get to see my neurologist.

My legs have been feeling weird recently, no biggie, just hope it isn’t the start of another attack. I have been carrying on and putting it to one side. After all, ignorance is bliss.


I know I have said before about the guilt I feel for certain things I cannot do. There is another aspect to the guilt too an odd one.

Recently I have noticed I feel guilty on my good days, almost guilty for feeling okay? I mean, I have MS I should never be okay? Should I? 

I often wonder, with my impending MRI, whether someone will turn round and say I have magically been cured. Or maybe all the tests were wrong? It really is a weird feeling. Almost like the good days mean that you are all better? 

This is a lifelong condition however, so this really will not happen. I guess in a way I am in denial? I find myself drifting between many emotions towards my MS, none of which are nice or normal.

Also I feel bad for wanting there to be more activity. This is something maybe only someone with MS can relate too. Inside I think my mind thinks that daily medication will make it all okay, but even this might not suit. 

After seeing the incontinence nurse today I felt, well, flat. I have to improve my bowels before we can do anything else. Everything consists of waiting and trying all the time. I am not good at waiting. I loathe it.

And So, It Begins!

So recently it has been pretty quiet on the appointment front, partly due to me cancelling. Now I am letting them flood in again and vow to attend them all.

A week today is my next MRI scan. I am unsure of how I really feel about it. Part of me is scared, its loud, lonely and uncomfortable. Part of me is anxious, as I really want the results, but what will they be? Will they show enough change to warrant having daily meds? I sure feel alot different. If it does show change then I start a new chapter and a whole new load of side effects. If it doesn’t show the changes then I am stuck in the unknown, waiting for  another attack.

I have been waiting for this day for ages, it was left so long due to the steroids I had. Enough time needed to pass for the steroids not to mask the new activity. Now its so close I am wanting it less and less. 

The incontinence nurse is coming friday, i’m not incontinent just yet, but she will be scanning my bladder to see how she can help me and my stupid brain.

I got my disabled badge for the car today. I waited ages but it has come at last. This will make trips out much easier on me. 

Hubby and I are getting on alot better. Still have a few issues. I can’t help but feel uneasy sometimes, compared even. I am not the active person I once was, I don’t look the same and I cannot do the things I used to do. I am petrified he will leave me for someone else. Can’t be easy being married to someone like me. 

Well that’s my update, all comments welcome, thank you for reading, this is what keeps me going. Well this and my girls. 

A View From the Other Side

I recently met this lovely lady on twitter. Her Name was Nikki, you should give her a follow, she’s lovely. Anyway we got to talking and I found out the her Mother had MS too. Sadly she has now passed away, but Nikki, being wonderful and incredibly strong agreed to answer a few question I needed to ask, to I could see MS from another perspective. Here it is:

How old were you when you found out your mum had MS, or did you always know her with MS and if so when did you start to understand?
My Mum got diagnosed with M.S in 1991 when I had just turned 3, as you can imagine I had no concept of it at all, and to look at her you probably wouldn’t have known yourself. I do have an early memory of my mum in hospital with these massive sunglasses on from when she lost her sight for 2 weeks, other than that I think I was about 6 or 7 when I started to fully grasp that my Mum was special J
This gives me a slight bit of relief. I always wonder if my 3 year old sees me as different or odd. I never though of the word ‘special’
How much did you feel it affected you?
At first I don’t think it affected me at all, my (Year 4) teacher explained to my entire class what M.S was, which I thought was really understanding of them. My Mum did everything everyone else’s Mum did. She took me to rainbows, School and everyone simply adored her. It was around 1998 (I was 10) when things started to affect me. Seeing your Mum use crutches is upsetting whatever the cause, even if they were Neon Pink… She also had a wheelchair, although not fully dependant on it at the time it was always there just in case. My Mum had chronic progressive Multiple Sclerosis, it was aggressive. Doctors all over the country hadn’t seen anyone as bad as her and she was so young to. The difference from 1998 to 2001 was phenomenal. She became wheelchair bound, and lost her speech, sight, was fed through a tube in her stomach, and had other tubes I’m sure you can guess what for, but it was all essential for her to have some dignity. She then eventually became bed bound around 2005. It was hard to sit down for a meal knowing she couldn’t join us, and would be sat a few feet away listening to us eat. It hurts emotionally. I think this is when it affected me most. Not because I felt deprived of a Mother, but because I couldn’t do more. Luckily, I have an AMAZING Father who became her round the clock care. He refused outside help as she was his wife and I’m pretty sure they have led me to believe in fate. Also when we went out in the early days it annoyed me when people stared. I don’t understand what is so fascinating about someone disabled? Granted she did have a fancy kitted out electric wheelchair, so Ill blame her fancy wheels for that part.
That’s lovely, your mother really does sound so amazing and strong. I try and do everything I can for the girls, so I am like every other mum. I could’nt imagine what that felt like, in regards to the eating tea thing. I would, like you be heart broken. I try not to let the girls come with me to appointments etc, so its more normal and they don’t see mummy hurt. Sometimes I worry more about how they feel than how I am feeling. I know all about the stares as I have my stick, but to look at me I look fine. I wish people wouldn’t be so quick to judge. 
Did you resent her for having MS
Never have I resented my Mum for M.S, yes it is beyond frustrating. I couldn’t have her at my University Graduation, or my Dad, but I think that was worse for them not me. I made the decision to move out in 2007 for Uni in Leeds, however I moved back in 2009 and continued my degree locally to be more help. I think the worst part of it was not being able to help her. I know she appreciated the little things I did for her though. I paint her toes and do her nails, and help to bathe her even if I was upset about it, I tried not to let her see. I knew she would feel bad and that’s not what I wanted. It actually prompted me to help others. So, in 2008 I applied to CCUSA (like camp America) and worked at a camp in Maryland near Baltimore, and worked at a camp for disabled children and adults. It was possibly one of the best experiences of my life.
That is amazing it inspired you to help others. With the girls being so young I have yet to come to the help obstacle, I pray I will never need it. I know that she was probably more than grateful  for the little things, after all they tend to make the most difference to the way a person feels inside.  
Did the fact she maybe was not able to do everything you would have liked too ever affect you?
The only thing that has ever bothered me was all the big mile stones in life. Graduation, 21st, getting married, and all the usual family things. That’s trivial though and I got over them not being at my graduation as it was hideously boring, my 21st was as normal as most 21 year olds, and I would have found a way to have her at my wedding had she been here when the time comes.
I admire this, also being a mum I know she would have wanted nothing more than to be there with you. 
Do you see her as ‘different?’
I did, but only because she was MY Mum. I think every child thinks there Mum is different and special. I had an almost glue like bond with her and was even ridiculed for being so attached to her as a child. Which looking back now I am very glad I was so close to her growing up. She was also an amazing singer and this was her outlet. She travelled through the North West and Yorkshire singing her heart out in pubs and clubs and everyone was magnetised to her. I think it helped her forget which I am thankful for.
 I never thought about it like that, that all children see their mum as different. It lovely she had an outlet, somewhere to let it all go. I know for me its writing my blog and being honest even if it is awful.
Was it something you spoke openly as a family about?
Unfortunately my Mums side of the family decided they didn’t want to visit any more, and my Dads immediate side are mainly in Cyprus, but kept in touch by ringing. Obviously this was upsetting that her siblings stopped visiting for my Mother and for the rest of us. I don’t think I could comprehend why they didn’t want to visit there sister, I know it’s not because they couldn’t accept it because that’s not what they were like. I think it was just them being selfish and heartless. However I think she realised the family she needed was right in front of her. We stopped looking up things about M.S a long time ago. Whatever happens in M.S can’t be helped. What will be will be.
Very true, no-one knows what’s coming next, personally this scares me the most, being out of control. It makes me see how lucky I am to have such a good support network family wise.
Did friends, peers notice?
I’m lucky to have the most amazing friends, who would visit me, not be mad if I had to cancel plans, or rearrange. My college were also excellent, and understood if I was late. In fact I did my final major project as a college student on M.S and raised quite a bit of money for the M.S society. At uni I turned up more than people who lived round the corner! So in that respect no one noticed even though I did tell everyone, I had to. I feel proud of my parents they had been through so much, and my Dad stilled looked at her with gooey eyes.
I hope my girls are proud of me when they grow up. Being young my friends have mostly gone, I only have to odd few who support me. But like you say, family really means so much more. Your Dad sounds like an incredible man, I only hope my husband will be the same. 
Did or do you worry you may have it?
I did. In 2007 I started to get symptoms my Mum had I think I was about 18 at the time. I was too scared to go to the doctors, but one night I could barely talk and it looked as if I had had a stroke. I was rushed to the hospital where I was misdiagnosed for the next 2 years. I was diagnosed with MG (myasthenia gravis) a muscle weakening disease, which like M.S is auto immune and can be passed down through each generation. Luckily mine is easier to treat as it is symptomatic and not degenerative.
Bless you, you really are strong. I often discuss is with my neurologist, who always tells me it rarely shows up twice in the same family line in the same generation, it normally takes a few years to rear its ugly head again.
I just want to add, that M.S is different in everybody, like every illness. I have met other people with M.S that have led the most normal of lives. They have the odd bad day and lots of good days. Please don’t think that what happened to my Mum will happen to you. She was unlucky. Unfortunately I lost my Mum on August 25th 2011 she was only 48. However not from M.S, this did complicate the whole situation but the hospital failed her in many ways as they didn’t understand the illness, or diagnose what she had actually gone in for, and saw her as a disabled piece of meat. They assumed that because she was bed bound and all the rest, she had less of a life than everyone else. Her death could have been prevented, and I have always been a firm believer that everything happens for a reason, however I am still trying to figure this one out.
Thank you so much for everything, especially answering my questions so honestly. I know MS is different in everyone, but right now I just can’t help but worry. I cannot believe your Mother was treated this way, I am so sorry and wish I could give you a big cuddle 🙂

Seeing MS from a different view has meant alot to me. It has even helped but to rest some of the demons of the girls seeing me differently, and resenting me. 

Nikki, my love goes out to you and your family, you really are amazing.

Please head over to Nikki’s blog and follow her adventures 🙂