I don’t let you!

You don’t see me struggle, I don’t let you.

You don’t see me suffering, I don’t let you.

You don’t see me grimace, I don’t let you.

You don’t see me fall, I don’t let you.

You don’t see me having to take painkillers, I don’t let you.

You don’t see me cry, I don’t let you.

It’s not because I am particularly brave or strong, it’s because it’s the only way I know how to fight the MS. I know I am in for a one sided battle against my MS, that’s fine I know I probably have worse to come. I’m ready for that, I have the positivity and stubbornness to keep on fighting as long and as hard as I can.

I try not to let people worry about me, there are plenty of people out there worse off than me. I can handle it, I’m used to it now. I don’t want loads of sympathy. I know I have loads of support from my family and friends, and I am very thankful for that.

I have moments where I get fed up of continuously fighting, but I will never give up. I’m in this for the long haul, I’ve got the wrong DNA to be defeated easily! I get knocked down but I get up again, you’re never going to keep me down!

So when you see me with a smile on my face, most of the time it’s there especially for you to see. It’s easy to put the smile in place most of the time, all I need to do is remember how much love and support I have!

Enough random waffling for today! 😛

Hales thoughts

I asked Hales to do me a little bit for my blog a couple of years ago, this is what she wrote!

So I asked a few people to do me guest blogs. And here is the first from Hales, my wife, my very best friend and totally my soulmate!!

So Rob asked me to write a piece for his blog. For those who know me I am quite a private person who does not do social media and tend to keep thoughts and my life private.

However I think Rob finds writing a blog therapeutic and a nice way to look back on good and bad memories.
When Rob was first diagnosed we knew nothing about MS. I remember we were sent home from the hospital with very little literature and a dvd. I can remember watching it with a stunning young girl, very young, in a wheelchair feeling so sorry for her and we were both quite surprised at how quickly you can deteriorate.
Over the years Rob has always been very positive, something he got from his Gran who was very ill for a long while but always remained in good spirits and always positive. I hate to see him having a down day, and being the most impatient of people, tend to either tell him to get over it (not helpful I expect) or ignore him and leave him to work through it. That may seem harsh but I don’t want to make him more down or upset, and do struggle to understand how he is feeling some days, even after all these years.

His perseverance and positive attitude is inspirational and I get so angry and frustrated when he is having a bad day and struggling to do anything as he has always been so active, it is just so unfair. You don’t wish anything bad on anyone, but he definitely doesn’t deserve to be living this way when you see and hear other people taking so much for granted.
A few people have asked me how I cope but it isn’t about me. Rob is the same person, just has that ‘wambly, drunk’ walk down to a tee lol and we just adapt the things we do and way we live so he can still be involved and do things. we are the same as any other couple, we just appreciate each other and live a little happier than most. The one thing I hate that he gave up is scuba diving as I know how much he loved it. Instead of thinking he would be a burden to the instructor i wish he would proactively look for someone who accommodates disabled divers, but that is his choice (and being a typical man won’t listen to me anyway lol).
I can’t imagine our lives any different now and still love him as much, if not more than when we met. Yes he still annoys me sometimes as I do him I am sure, and he really could do the hoovering once in a while, but I am so proud of him for continuing to fight this condition and would love there to be a breakthrough in research soon to slow down the deterioration for him and others.

I am looking forward to many more years of happiness with Rob, my partner and best friend I love you hun xxx
“our memories of the ocean will linger on, long after our footprints in the sand have gone”
That will have to do xx
Hales

Wishes!

I wish I didn’t have MS.
I wish I never had MS.
I wish my MS had stayed at the stage it was 10 years ago.
I wish there was a cure for MS.
I wish I could have just one day off from having MS.

I wish we still lived in Cyprus.
I wish we hadn’t had to move back to the UK, Hales was so happy living in Cyprus and I feel it was mostly my fault we had to move!
I wish I still had my own pool cleaning business in Cyprus. (Best job I have had in my life!)
I wish I could still handle working in the heat cleaning pools every day in Cyprus. (40c regularly in summer)
I wish I could still get the feeling of pride when I had cleanèd a pool and it was spotless!

I wish I could still scuba dive.
I wish I could spend hours taking photos while scuba diving.
I wish we still lived in the bungalow in Protaras, with a nice swimming pool in the garden!
I wish I still helped to look after the colony of stray cats near the bungalow.
I wish I still helped with other stray cats in Cyprus.
I wish I had the money to send to the people still over there helping cats.
I wish I could still work full time and be a bread winner again!

I wish I didn’t have to watch Hales work so hard and have to do so much for me now!

But it is what it is and it’s no good looking backwards, I keep going the best I can and will continue fighting. I can’t change the past and there isn’t a magic fairy or genie to grant wishes! I make the most of what I’ve got and I know I am incredibly lucky to have such a fantastic wife at my side. I have a really good network of friends and family behind me all the way as well, so I keep as positive as possible for everybody.
That was a good rant, think I’ll publish this on my blog!

Rob

20th October 2019

I’ve been trying for ages to get back to writing a blog. For some reason even though I get the idea in my head about how to get going again as soon as I sit down and open my blog site my mind goes totally blank and I write nothing!

Almost a year has gone by since I last managed to sit down and get a few of my thoughts written down! It’s time I got myself back in the habit of making time to transfer my thoughts into writing!

My MS is slowly deteriorating, enough for me to notice the changes in my abilities. My walking is definitely getting worse, I can’t walk as far as I could last year. I still walk as much as I can though, I’m not ready to be pushed around everywhere just yet. I have just bought myself a new rollator though, one that can be used as a kind of wheelchair if I need it.

At the moment I’m having some vision problems, not sure if they are MS related or down to some new tablets I have been taking. Ive stopped taking them to try to establish if they are the cause or not. They are for a MS drug trial I started on a few months back so it seemed a good idea to me to try stopping them for a while. If I’m still having problems after a couple of weeks I will presume it’s not the trial drug and possibly restart them.

Having extra tests on my bladder issues at the moment, hopefully something will be sorted soon to try to make it less of a hindrance to everyday life! Apart from that I’m not doing too bad and still fighting.

Well I think I will finish for now and aim to get back into regularly doing a blog! If there is anything you would like to see me write about please let me know, I’m not shy and prepared to discuss anything!

Rob

23 Years!! 18th December 2018

It was this time of year 23 years ago when I had my first symptoms of MS, Optical Neuritus.

I remember it really well, going to the doctors and they were thinking it was just some viral thing. Pain in my left eye and blurred vision. It gradually got worse, so I eventually went to the hospital. That started the loads of different tests over several months to try to find the problem.

I remember going up to Hull for Xmas, by that time my vision in my left eye was totally black! I remember it was freezing fog all the way up to Hull, so driving with only one eye was extremely challenging and a little bit scary.

We made it up there though, had a good family Xmas and got back home to Ipswich without any problems.

I remember when my eye was still quite bad and nobody knew what the problem was, being told by the optometrist that it was possible I would not get my vision back in my left eye. Luckily after some steroid treatment my vision came back to almost as it was before it started.

It wasn’t until the August of the following year, after the multitude of tests, that I was given the diagnosis of it being MS,

For the first 16 or 17 years my MS didn’t have a major effect on my life, it’s only when it changed from RRMS to Secondary Progressive MS that it started having a large impact on my life.

It is what it is! Yes it’s slowly getting worse, and yes I know that I can’t do anything to change that.

But I’ve had a fantastic life so far. And I will continue to live my life under my conditions, not the way MS expects me to be! I have the most supportive network of family and friends anyone could ever wish for. Most of all I have the most loving, hard working, understanding wife in the world ever! Who means absolutely everything to me, and is my main reason for existing and fighting this challenge with every fibre in my body. Which I will carry on doing for as long as there is breath in my body!

Anyway, enough for today. Keep fighting the fight and never give up.

Rob

Thursday 13th December 2018

Hospital appointment this morning at Dermatology dept. Had a lesion removed from my forehead which has been sent off for a biopsy to see if it’s anything nasty! Results back in 4 to 6 weeks.

Not feeling too bad today apart from a sore head and a thumping headache, something I can cope with though.

Didn’t go to the gym this morning, I’ll see how I feel in morning and possibly go. Day of rest won’t hurt I guess.

Rob

Wednesday 12th December 2018

I was hoping to get back to doing this regular and continuing my story, it just hasn’t really happened. I thought I might try something different and just do a daily blog, even if it’s just to say how I am feeling, doesn’t have too be loads!

Been to the gym this morning and did my usual workout, bit more achy since I finished so at least I know I tried. Popped to the shop to post a parcel and grab a few bits, then back home to have a chill out and a coffee.

I’ve got a hospital appointment tomorrow morning so I won’t be at the gym. Having a lesion removed from my forehead and sent for biopsy to see if it’s skin cancer or not. Not really too worried about it, it is what it is and I’ll deal with whatever it is when the results are back.

I’m hoping to just do a small blog most days and maybe carry on with my story whenever I’m feeling a bit more in the mood for writing.

So that will do for today, I’m going to try really hard to get something posted every day.

 

Rob

Back to writing my blog and continuing my story!

I’m still here, still fighting and definitely not ready to give in yet! 😁

 

I kind of lost interest in doing my blog since my last post. I think it was mostly down to writing and obviously reliving losing Jasper and then Garfield so close together! We had them for 14 years, they were our kids and it was devastating when they both left.

I won’t continue with the story this time, this is just to get restarted and back to doing this regularly.

Still living in a nice bungalow on farmland and loving being surrounded by nature. It took us a while to get settled back to life in the UK, but I think we are doing OK now.

I’m going to the gym Monday to Friday most weeks and trying to keep as active as possible. Some days are particularly hard but I go and push myself anyway. 💪

My MS is still deteriorating, nothing I can do about that. I try to stay positive though and keep pushing as much as possible.

Hales is still working full-time, and looking after me a lot more nowadays around work. It does upset me sometimes to see how hard she works and then has to do virtually everything around the house too!

Frustration is definitely the worst part of having MS, wanting to do things you think you should be doing and not being able to. I quite often lose my temper with myself and have even bruised my knuckles from punching the wall!

But it is what it is and I will carry on fighting it and do everything I can to try to slow it down as much as possible.

Well I think I will finish this for today, I just wanted to get back to it and show that I am still here. I will try to continue my story next time and get a bit closer to the present day.

Back soon

Rob 😁👍

 

Thursday 4th January 2018

So it was early 2009, we had lost Jasper to illness and Garfield was not doing great either. Cookie was still a kitten really, but she had learnt to boss our 2 male cats fairly early on. I think she did miss Jasper when he was gone, Garfield definitely missed his brother as he would wander around alot as if searching for him.

We started to get as settled as we could in the new place, even though from the very start there Hales didn’t really like the place. She couldn’t really put her finger on the reason why, but it was obvious to me she wasnt totally settled there.

Garfield continued to amaze me at how quickly he adapted to the new place, and managed to get around being totally blind by then. We were taking him to the vets regularly for check ups and it was at one of these that the vet told us his kidneys were starting to totally fail. We were told that he would be starting to suffer because of this and that was one thing i would never let my cat go through.

So we made the extremely difficult decision to end his suffering and let him go. Garfield had always been my cat and Jasper more Hales cat. No particular reason for this, it was just the way it was. If I thought it had been hard holding Jasper while he was put to sleep I was in for a huge shock having to do it with Garfield!

It genuinely broke my heart, holding him and feeling his little heart take it’s last beat and him take his last breath. That was definitely the hardest thing I’ve ever had to do, I am actually in tears right now trying to write this!

I was still working hard running my business, and I was still managing to get some scuba diving in as well. I was starting to notice that I was struggling a little bit with moving about with all my diving gear on, but not enough at that time to stop me.

I was helping a friend when she was teaching new divers so that gave me chance to carry on with my diving and take loads of photos which was the thing I really enjoyed while scuba diving. I was still improving my diving qualifications and was starting to do my rescue diver course.

Well I think that will do for today, I will continue this soon. Need to go wipe my eyes from all the tears anyway!!

Rob

Monday 1st January 2018

Well that’s 2017 over and done with, time to start 2018. Hopefully it will be a bit easier this year with less stress and less huge changes!

2017 started ok, we were still living in Cyprus and looking forward to another year there. I even managed to get over to the U.K. at the end of January to visit family in Hull and spend the day with my brother on his birthday. Even went to my first football match in alot of years and watched Liverpool, unfortunately they lost but still good to be there.

We definitely were not expecting things to change so much later in the year! I look back now and I can’t really believe how much things have changed for us.

It all started with Hales being told she was being made redundant after 16 years with the same company, the last 10 while living in Cyprus. It was definitely a shock and it took as a while to understand the full impact of the news.

We talked over all the options available to us, ultimately we decided our best option was to return to the UK and try to start again. We had always rented fully furnished in Cyprus so we didn’t have huge amounts of stuff to get rid of. We sold some stuff and gave away quite a few things as well.

We managed to put a little bit of money together from selling a few bits and a small bit of savings we had. We used that to pay to get back to the UK and start to furnish the place we had found to rent. We had decided to move back to the Ipswich area as we had lived there for longer than anywhere else, so it was a familiar place to be.

It’s been a bit of a hard year, getting used to life back in the UK. Plus we are kind of starting a new life again, having to gradually buy everything we need.

My MS is still deteriorating and I am still trying very hard to slow it down as much as I can, and keep my fingers crossed somebody finds a cure soon! It is what it is though, I don’ worry about it too much as that won’t help.

So life goes on, we are making a new life and new memories here. We are already feeling quite settled now and ready for any more challenges thrown at us!

That will do for today, I am determined to keep posting regular updates on my blog this year. So keep tuned in for further waffling from me!!!

Rob