Sunday, 17 March 2013

Sponsored Swim...........28th April 2013

"Walk A Mile In Our Shoes"

I have always been a strong swimmer. Actually I'll rephrase that - I always was a strong swimmer, until I was diagnosed with MS.
About a year or so after I was diagnosed, I had a bad relapse which affected my legs......I have been using crutches (and I have a wheelchair when needed) ever since.
I had been having physio and I was talking to my instructor about how I had really enjoyed swimming and that I missed being able to go. She said there was no reason why I couldn't still go and she'd be happy to come with me and see how I was and help with some exercises etc.
I took her up on that offer, but after that I didn't swim for about eight or nine years!
I didn't like it :-( I couldn't just get in and swim as I used to. My legs didn't work properly, plus I couldn't really feel them. It felt really strange, the chlorine on my skin was really uncomfortable. I also had an issue with it being a public pool. We had gone to a disabled session but there were still lots of other people about and because I was unsure of what I was able to do I felt very vulnerable.
It put me off for years :-(

But about two or three years ago, we were invited to use a private swimming pool. They would make sure no-one was around when we were there and they were delighted that it may be of some help to me!
We started going reasonably regularly, trying to go about once a week. It was amazing!
Because no-one else was there I had the freedom to try and see what I could or couldn't do and because Martin was there I felt safe. 

We bought a foam noodle which gave me reassurance that I had something to hold onto. We devised a few exercises for me to work on whenever we went. 

I was starting to enjoy it again. 

I wasn't swimming as such, my legs still don't work in the pool, but I was in the water and just walking in water is using muscles that don't normally get used! ;-)  They always say that swimming is a great form of exercise because it is an all over experience but mainly it is weightless exercise so you aren't putting any undue stress on your body. 

Our close friends, Joe & Rob, started coming with us, which was good. I started trying out whether there was any way that I could actually swim. With Joe, Rob and Martin's encouragement, I realised that even though my legs don't work, my arms do. 

I started being able to swim widths. I couldn't manage lengths and I didn't really have the confidence to try yet.......I was worried that I'd get tired and in trouble so I stuck to widths! 

After a while I did eventually try doing a length and low and behold I managed it! 

I was really happy...........but I could only manage two or four lengths each time I went. Bear in mind though..........I was only using my arms! ;-)
I had come quite a long way but I was still only doing widths and the odd length here and there. 

One day I decided that I needed a goal to work towards. 

Joe & I were talking about it and we decided what better than to do a sponsored swim!
It would be something I could work on, we wouldn't set a date, we could just train until we were happy that we could achieve whatever we set ourselves!
Joe had heard of a saying "Walk a mile in our shoes" so we decided to take that as our inspiration. 

We worked out that a mile in the pool would be 120 lengths. That would be a bit too ambitious really, so as this was to be a joint fundraiser we decided that we would do half a mile each, so 60 lengths each!

I want to raise money for the MS Society and Joe is doing it for the British Heart Foundation.
Unfortunately, because of health issues with both myself and Martin last year, we didn't go swimming for about six months.
But by September last year we were back in the pool and after a few weeks, I was going twice a week, whenever we could!
We decided that we needed to do this properly if we were going to seriously reach our target so we sorted out a training programme, decided how we were going to do it and training began!

Like I said, there was no time limit, on either how long it took to swim the 60 lengths or when we actually decided to do it. This took the pressure off. We could just work on it as and when we could without worrying how and when we were going to do it!
We devised the way that we wanted to tackle it and set about training.
We decided that we would do it in a kind of relay. Joe would start, she would do 6 lengths and then stop and I would swim 6 lengths.
We did that for a couple of weeks, until we were both happy and then we would add in the next 6 lengths. Joe would swim six lengths, then I would do six lengths, then Joe would go again and once she'd finished I would go again. This was the basis of our training. We had tried to do ten lengths at a time but it was too much to do in one go. Joe suggested that we do it in groups of six because our goal was 60 lengths, therefore we knew we had to do 10 sets of six!
It is a great way to train because we are constantly pushing ourselves but with no pressure! We knew we weren't going to set a date to do it until we knew it would be an achievable goal!

I have become addicted! I love it!
Just being in the pool gives me such a sense of freedom. I don't need my crutches or wheelchair, I can just be free and it feels amazing! 

Martin and I go twice a week whenever we can (Joe joins us whenever she can) and I get quite frustrated now if I can't go for any reason!
I feel now that I am really doing something and it feels good. I'm not able to go any more than twice a week because my recovery time is such that I can't manage any more! And I'd be lying if I said it wasn't hard work or that I don't suffer for it afterwards.
When I'm in the pool I can do anything but when I get out boy does it hit me! My legs ache and walking can be a big issue. Pain hits me all over, my body will buzz like I've been plugged into electricity and fatigue.....well it's like I've been hit by a truck.......but it's still worth it because there is a reason for it. 

Knowing that doesn't take the pain away and it doesn't make my legs work but mentally it makes me feel good! :-)

And now here we are, almost able to do 60 lengths each! Last week we did nine reps each, 54 lengths.......this time last year I would never have believed I'd be able to swim 54 lengths! 

We have set the date as the 28th April and that is because it is the start of MS week 2013. As it happens it is the MS Society's 60th anniversary of it's creation. I read somewhere (some time after we had decided that 60 lengths was our goal!) that the society was calling for anyone doing any fundraising to incorporate the number 60........perfect eh?!?!?!

I am incredibly proud of what we are doing and what we have achieved. I couldn't have done it without Joe and Rob and of course my wonderfully supportive husband, Martin! He has been there every step of the way, getting me to the pool at least once a week and being there with me......I literally couldn't do it without all of you. XxXxX

And so now here's the bit where we pass it over to you!
We have two fantastic charities that are very close to mine and Joe's hearts. 

If you could manage any small donation both of us and definitely our charities would be so grateful.
Just follow the link below and it will take you to our fundraising page, where 100% of the donations will be going to our two chosen charities.


A note from Joe

My name is Joanna Walling and I am swimming in aid of the British Heart Foundation.
When I was 11 years old, my Dad died suddenly of a heart attack.  He was on medication for high blood pressure and high cholesterol and yes, his cuddliness meant he was overweight and yes, he had a highly stressful job but nothing prepares you for the unfairness of losing someone so suddenly.

When I was in my mid twenties, I was diagnosed with Familial Hypercholestrolemia.  This is an inherited genetic disorder that means that I have very high levels of LDL (bad cholesterol).   

This disorder is kept under control by daily statins and maintaining a healthy diet and exercise. 
I wanted to promote awareness of this disorder as high cholesterol is not to be always associated with the sedentary, junk food eating chain smoker - in fact their cholesterol is probably lower than mine! 

The British Heart Foundation campaigns tirelessly for cholesterol awareness and thanks to leaps and bounds being made with medication and testing, my prognosis is infinitely more positive than it was for my Dad 25 years ago.
So, why a sponsored swim?  I am taking the tablets every day and my diet is relatively good but I am rubbish with the exercise!  Amelia needed an exercise goal too and so 'Walk a Mile in Our Shoes' was created! 

I am so proud of what we have achieved and our patient men have supported us all the way. 
We would love you to support our charities if you can.
Thank you :) x

Saturday, 16 March 2013

And More Photos!! :-)

These photos are from various places we visited after we came off the Caledonian Canal. 
We went to the Highland Wildlife Park, The Sea Life Centre at Oban, Falkirk Wheel, The Harry Potter Steam Train and then there's a couple from the northern Lake District!
We were due to go North Wales, Porthmadog and Snowdonia and then down to South Wales before we came home, but because Martin was SO poorly we came home two weeks early. 

Thankfully he is well on the road to recovery now so we have planned to finish off the holiday later on this year! 
We are going up to North Wales, on the edge of Snowdonia, to do all the things we want to up there and then we are coming down to South Wales. We are having a week on The Mon & Brec Canal! 
We are really looking forward to that. It will be lovely for Martin to be able to fully join in with everything!! :-)

But for now enjoy some photos from last year!

Highland Wildlife Park

Harry Potter Train

Glenfinnan Aquaduct

Falkirk Wheel

The Lake District

More Holiday 2012 Photos!

So as promised I will be posting some more photos from our 2012 holiday. 
I think the next lot will be from our time on the Caledonian canal. It includes Loch Ness and we go from Inverness to Fort William with access to Ben Nevis when we got to Fort William.
The scenery on the Caledonian canal is absolutely stunningly breathtaking..............well see for yourselves!! :-)

 Urqhart Castle

Loch Ness

Urqhart Castle

Our Boat 'Highland Glen'

Ben Nevis

The three peaks including Ben Nevis & Annoch Mor

My Dad and I on a gondola going up Annoch Mor!

The view from the top of Annoch Mor

The gondolas!

Friday, 15 March 2013

2012 Holiday photos

I have talked a couple of times on here about a holiday that my Dad, Martin and I were going on last year.
It was going to be six weeks and we were going all over the UK.
We actually only managed four weeks as we returned home because Martin was very poorly and we needed to get him sorted out.

We went from South Devon up to Birmingham. From there we travelled up the East side of the UK. 

We went into Scotland via Edinburgh and then made our way up to Inverness. 
We had hired a boat from a company called Caley Cruisers to go on the Caledonian Canal for eleven nights.
Incorporating Loch Ness, Loch Lochey and Ben Nevis!
The canal trip was amazing, the scenery was absolutely stunning, breathtaking. We have some beautiful photos from there!.

After we had returned the boat, we went to Fort William for a few nights, on to Killin and then to Dumfries, taking in the Falkirk wheel on our travels!

We then left Scotland and went down to the Lake District. We had booked a week near Cockermouth but we only stayed for three days and then we took Martin back home.

It was a wonderful experience and we did have a lovely time...........even with Martin's issues! 

At least he is on the mend now and we are going to finish off the trip later on this year, which will be very special!

Anyway the following are just a few of the photos we took............there may be a few posts with photos over the coming days, as I look them out!

So Enjoy! XxXxX

Sunday, 10 March 2013

Tysabri number.......too many to count!


And so last Thursday it was Tysabri infusion time again! I can't believe just how long I've been having these infusions.
30th June 2009 was the date that I started the treatment and the beginning of September 2009 was when they put my portacath in. That means I've had my portacath in my chest for over three, how time flies and it's amazing how you get used to something.
I remember when it was put in and each day I thought about what to wear so that no one could see it, now though, I don't even think about it being there!!

I'm not convinced about how much good the Tysabri is doing me but my consultant is happy with me being on it and as I completely trust him I'm happy to continue with it. Plus there's no real alternative so there's no point in coming off it!
I think one of my issues with it is that I don't feel any different while I'm on it. What I mean by that is that I know people who can feel when they're ready for their next infusion. They know when they are coming to the end of their four weeks and are due the treatment. I don't feel that at all. In fact last year, when we had our six week holiday, I had a gap of seven weeks in between my infusions but it wasn't an issue. I didn't struggle while I was waiting that extra time.
My frustration is, because I don't feel any benefit, it's hard then to convince yourself that it is actually doing you some good! 

But as I say, until something better comes along I guess I'll be having a needle in the chest every four weeks for the foreseeable future!! :-)  


I wish this weather would decide what it wants to do and get on and do it! One minute it's mild and warm and the next it's freezing cold and bitter.
The cold has a horrible impact on my MS too.
My feet get very very cold, but my problem is that it then becomes difficult to differentiate between cold and pain. My toes especially. Because I have very little proper feeling in my feet, most of the time I can't tell what's going on. The carers that I have coming in are always telling me that they are freezing cold.
They put cream on my feet (Hydromol and Double Base) because when they first started coming to me my feet were in a dreadful mess. Very dry skin on the bottom of my feet, not helped by me walking around with nothing on my feet! The number of times that I stepped on something without realising it! ;-)
But I was referred to our local podiatry service and between the carers putting cream on and the podiatrists cutting my nails, my feet are in the best condition they've ever been's a shame I can't feel it isn't it?!?!

I thought that we may have made it through winter and that spring was just around the corner but apparently we may be in for snow again next week! 

And by we I mean the country but not us here.........we very rarely have any of the beautiful white stuff much to Martin's annoyance!! ;-)

Anyway whatever weather you are hit with next week, I hope it finds you well and able to cope with it!

Until next time! :-)

Sunday, 3 March 2013

I'm back!

Hello everyone!
I can't believe that it's nearly a year since I wrote my last post.....where has the time gone?
Well I can tell you that we've had a nightmare 12 months but hopefully we are out the other side now.

So where do I start??


The last time I wrote on here I was going into hospital to come off the opiates that I was on. 
I ended up being in hospital for three and a half weeks and it was one of the hardest things I have ever had to do. But I have to say that the Sisters, nurses and HCA's at the hospital were all amazing. I'm fairly sure that if it hadn't been for their patience and encouragement I would have given in very quickly! 
I didn't give in though and I came off all the opiates that I'd been prescribed. 
The trouble was that it didn't work, I was still in huge amounts of pain, if anything more so, which was really disappointing. 
But it answered the question that we wanted the answer to.........the opiates weren't causing my pain. 
And by coming off them, even though I was going to go back on to something, it meant I could go on at a lower dose and we could effectively start again. 
My pain consultant suggested that I try something different this time, so I went onto phentynol patches. I didn't really get on with these though. I didn't feel any real pain relief and the patches didn't really agree with my skin either!
I was slightly concerned that I was running out of options but my consultant told me about a new drug that hadn't been about long but the few patients that he'd put on it had really benefited from it and he felt it was worth a try for me.
It's called Tapentadol. It's another opiate, but I am on a significantly lower dose than I was on with the oxycontin etc. 
I have been on it now for around nine months and I am fairly happy with it! I'm not pain free and I do still have some horrible sensations that I've no idea the trigger for, but if I was asked to choose between this and Oxycontin then I would choose Tapentadol! 


So I came out of hospital mid April which gave me just under a month before we were going away with my dad for six weeks around the UK as a kind of joint 40th birthday present from my dad...........Our big holiday! 
The trouble was that I'd been so inactive in hospital that my legs had really seized up. I had to have intensive physio for a few weeks and I was told to take it really easy and give myself time to recover. 
There was a problem with that though.
Martin was not feeling well himself. He wasn't eating well, he was incredibly pale, very lethargic and fatigued. 
So I found myself trying to look after both of us........not ideal!! 
Before we knew it we were celebrating (and I use that term very loosely) Martin's 40th birthday (a Christmas party in May.........genius!) and then we were off on our six week trip around the UK - I'll be doing a separate post about that later! ;-)
Unfortunately Martin was really struggling. He was getting less and less of an appetite, he was so fatigued and to be honest it was incredibly worrying.
We got to the Lake District on a Saturday and by the Tuesday, we returned home, two weeks earlier than planned :-(

It's quite a complicated story but basically we were told that the doctors were going down the Lymphoma route. He'd had a CT scan, various blood tests - he'd had to have at least two blood transfusion sessions because his blood count was worryingly low. They then did a bone marrow aspiration, which didn't give them any results so they decided then to do a biopsy of the lymph nodes in his abdomen. 

This was all done over the course of about 4 weeks but all the time Martin was getting weaker.
He had the biopsies done as keyhole surgery and it was from those biopsies that they eventually got a positive diagnosis. 
He was diagnosed with a malabsorbtion infection called Whipples disease. It is incredibly rare and the biopsies were sent up to the research department of Great Ormond Street so that they could confirm it. They said that his was only the 10th case they'd seen in 10 years!! 

Trust Martin eh?! 

Fortunately there was treatment for it. He was admitted to hospital for two and a half weeks where he was fed by tube and given IV antibiotics, as well as all sorts of vitamins and minerals. And when he was discharged he was put onto oral antibiotics for at least the following 12 months.

I'm pleased to say that he is doing brilliantly now. He's put on over four and a half stone and is looking amazingly healthy. He still has his off days but to see him eating so well and having enthusiasm for life is fantastic!

When I think back to this time last year........well I really don't want to! ;-)


One thing I just want to say about our experience of Martin's poor health throughout 2012 was the amazing support we had from our family and friends. It's at times like that you really find out who your true friends are and whether it was driving me to the hospital or visiting Martin when I couldn't go or driving me to Plymouth so that I could have my treatment and many more gestures such as these, it all made the difference to us both and for that we will forever be incredibly thankful.


Of course this was such a stressful time and I wasn't looking after myself particularly well. I have to say that our GP was fantastic. She was fighting Martin's corner with everything she had but she was also concerned about the affect it was all having on me.
Against my better judgment, I had to agree to getting outside carers set up to come in and help me. 
I was SO frustrated.
I felt as though I could manage everything but it wasn't until they were coming in and helping me that I realised just how much of a struggle it had all been and how much I wasn't looking after myself properly at all, Martin was my priority!

It has been such a difficult thing to get my head around. In my head I should be able to do everything and asking other people to do things for me has been such a challenge for me.

Luckily the company that I've got coming in has been great, I've got a lovely group of carers who come in and I see them now as friends really! 
I still find it impossibly difficult asking them to do things for me but most of them know what help I need now and they just get on with it!! ;-) 

So to be honest we were quite glad to see the back of 2012! 

It was supposed to have been a great year for us and yes we did have some definite going to the Olympics! But they were few and far between around the low lights! far so good!

Martin is well on the road to recovery and dipping his toe into a theatre project again, I've got my teeth into swimming (something else I'll write about in a separate post!) and we have booked a holiday in complete what we didn't do last year and with a canal boat trip thrown in for good measure!

I hope everyone is keeping well.....or as well as they can! I look forward to adding more posts over the coming feels good to be back!! ;-)

Much love :-D