I want to be able to walk without stumbling. I want to be able to walk more than 50M without aching even more. I want to be able to ride a bike, pedal and motor. I want to ring my friends up and say lets go for a dive. I want to be able to go for a run or a long walk to try get my fitness back. I want to be able to sleep right through the night without going to the loo, or worrying I will wake up wet. I want to be able to wake up in the morning totally refreshed and not aching.

There are several other things I want but I know I will not get any of them. This is not me being down or depressed, just saying a few of the things that go through my mind some days. I know there is no cure for what I have, but I just have to keep hoping there is a scientist out there who will discover a miracle cure for MS.

Despite all this my life is not too bad really. I have a wife who means the world to me, and she does more and more for me and never complains. I live in a really nice bungalow with it’s own pool. I live in a country that has good weather most of the time. I have a job that is not too difficult for me to do most of the time, and it is close to where I live.

I have friends and family who care about me and ask after me to make sure I am okay. I know that there are people there to help me if I ever need it. We are not rich, but we are comfortable (That took a lot of hard work to get to being!)

So, yes I do occasionally feel a bit down and depressed. But all I need to do is look at all I have and then I don’t worry about what I don’t have. I try to make the most of the life I have and I never worry about what is in the future, I live every day as it comes.

A quote I like is, ‘It’s better to burn out than fade away’, not sure where I heard it but I like it anyway. So I will continue pushing myself as much as I can, and I will continue living my life as fully as I can.

As always I will lift both middle fingers and say F U MS!!

Well that’s my rant for today, I will try to get back to story telling in the next blog

Rob :o)

Not wrote a blog in a week, so thought I had better stop being lazy and get back to it! Not sure what I am going to write about yet so will just ramble on till I get an idea.

It has been a fairly average week, nothing stands out for me to talk about. Some days have been better than others, not every day I want to borrow a chainsaw and get rid of the lumps of meat that used to be fairly good legs. There are definitely days I do feel like that though!

My legs are definitely slowly deteriorating. I look back at how I was a year ago and it is quite a difference to me, even 6 months ago really. I was hardly using my stick a year ago, I use it all the time now. I don’t think the aching has gotten any worse, just the wobbliness and distance I can walk.

I have been thinking that in the new year I am going to see about getting a wheelchair and maybe a mobility scooter. At least that way I can get about more, instead of having to drive everywhere and not be able to walk round places. Only thing is it will probably mean Hales will have to push me about sometimes, really hate her having to do more and more for me!

I think that is what frustrates me more than anything, Hales doing more and more. Sitting there watching her doing stuff I should be doing really hurts. I have to admit that that is the only thing so far that has actually made me cry. I have made sure nobody has seen me do that though!

I made and cooked her a quiche the other day, then had to sit and watch her cook a lasagne for my tea as my legs had gone really wobbly and achy. So I had done some good by cooking for her and saving her a job, then she still had to stand there and cook mine!

I reckon if I dwelt on it too much I would quite easily get depressed, sitting there and feeling useless is definitely not something I enjoy. What can I do though? It’s going top get worse and there is nothing I can do to stop it.

It’s just hard to describe how much it tears me up inside to watch Hales having to do such much for me. I have gotten used to how MS affects me but I don’t think I will ever get used to the effect it has on Hales. It’s just not fair, why should something I have make Hales life so bad?

Any way, I had better stop now before I do get depressed or start crying! At work so not what customers want to see when they come in the shop!

Will try to do a less depressing blog next time!

Rob :o)

Through most of my time of having MS I have never really suffered from fatigue very much. This year though it seems to have developed to be a lot more than it used to be.

It varies from day to day. Some days I hardly notice it, other days I just feel tired from the moment I get out of bed!

When it’s not too bad I can either just ignore it or just have a small 10 minute snooze and I’m back to being ok. On the days it’s worse I try not to have a snooze just in case I end up snoozing for too long and feeling even worse!

When it is quite bad I just feel totally drained and usually that makes me feel particularly achy as well. It’s very hard to try to motivate myself to do anything and I usually just try to take it easy and rest. I avoid taking any painkillers as much as possible, needs to be quite a bit of pain before I do take any.

It’s one of the symptoms that’s not visible at all, so I feel that people must think I’m just being lazy. I do sometimes push myself more than I should when I’m not feeling great, just so it doesn’t look like I’m being lazy!

That’s just one of my symptoms that I have to deal with, I just thought I would try to explain it a little bit.

Rob

 

Sorry there has been no blog for a couple of days, I decided to do absolutely nothing over the weekend!

I spoke about how my legs are affected by my MS in the last blog, so I hope it gave you an insight into how I am doing now.

I have been noticing for a while now that my arms are starting to have a lot of the problems I get with my legs. They are weaker than they were, never been particularly strong but I wasn’t totally weak either. They don’t really ache like my legs do, but they do ache some if I overdo things.

I get quite a bit of numbness in them, particularly my hands. I have quite often had to have a break from the keyboard when I have been typing my blogs, when I knew that I was not hitting the right keys. As I said before, re-reading and spell check have been used a lot!

The numbness is similar to the numbness you get when you have been laid on your arm and it has gone to sleep. You get pins and needles and your arm feels numb and heavy. That is how my arms are quite a bit, except I don’t get the pins and needles very much.

I have not been too bad over the weekend. I was at work Saturday morning, and then just chilled out in the afternoon. We went out for a meal Saturday night with Jack & Heather at La Cultura Del Gusto. It was a very nice meal and we came back to ours after and sat outside having a drink and a good chinwag till nearly midnight.

I had a disturbed night Saturday night, up for a wee 4 tines before I decided to just get up at about 7:15am. Not too sure why I was up so much as I hadn’t had a huge amount to drink, just one of them nights I guess. My legs were aching quite a bit, probably from not sleeping great. So I just chilled out Sunday, and had a bit of a snooze on one of the sunbeds outside in the shade.

We had a fry-up brunch at about 11am and that pretty much kept me going for the rest of the day. I put MotoGP on in the afternoon, sat and watched that and just relaxed. That’s about it really, a nice relaxing weekend with just Hales and me.

I have been thinking I might start doing some of my future blogs about my life before MS. Not sure how far back I will go, possibly back to childhood! I am also going to go into more detail on some of the things I condensed in previous blogs.

Well think I will finish waffling for today and publish this for today. Hopefully not too boring today and you will return for more.

Rob :o)

I have been asked a couple of questions, so I will answer them first.

19 years ago Hayley Marie became my wife. It was the best day of my life. From the first moment I met her I knew I was deeply in love with her. It was genuine love at first sight.

We have had really great times together and I can’t remember very many bad times. We have never had a proper stand up row and hardly ever have a disagreement. It is not because I am soft and do whatever she wants. I just know that whatever makes Hales happy will make me happy.

I am usually good at finding the right words to express myself, but there are not enough or the right words to say what she means to me. She is absolutely everything to me, she is genuinely my soul mate.

We still hold hands when we go to bed, and if we are out anywhere. I still give her a cuddle and a kiss whenever possible, and give her a kiss if I am going out anywhere. We would both rather stay home sitting on the settee together and watch telly than go out.

She has to do more for me because of my MS, but she has never complained at all. It is hard for me to sit and watch her doing things I think I should be doing, but she just gets on and does them. We both know she is going to have to do more and more for me, but I don’t think it bothers her at all.

Thank you Hales for making me the happiest man I could possibly be, and for being the best wife in the world.

Happy anniversary, I love you Taz amounts twice infinity!

Rob

Took Hales out for a really nice meal last night at La Cultura Del Gusto in Protaras. Food was excellent and service was very good too. I was pleasantly surprised at how cheap the food was as well, as I reckon it is an above average restaurant.

I have been trying to think what to put in my blog today. Do I go more in depth about part of my life with MS, do I just say how I am doing now or do I talk about life pre MS?

So I thought I would just ask the question and see what feedback I get, so get them comments coming in! lol

Having a fairly good day today, legs calmed down to a mild ache this morning. It has been hot again today but not as humid as it has been recently. The heat does make me ache more but no where near as bad as when it is humid. I even managed to avoid having painkillers at lunch time as I wasn’t feeling too bad.

Don’t want to tempt fate but my bladder has been better than usual the last 2 days. Not had to visit the toilet half as much as usual, and even the urgency has been better. Now I have said that, I bet I am up more than usual tonight and constantly going tomorrow!

Anyway, let me know what you would like me to talk about next. As you have already seen, I am not embarrassed to talk about any part of my life.

Rob

A little bit surprised nobody has left me any comments recently. I was hoping that people would give me an idea as to what they are interested in me talking about. Not sure what to write about so guess I will just waffle on about something!

I have been trying to think how I can explain about the pain and other symptoms I have but struggling as to what to compare it to.

I have had quite achy legs today, possibly due to it being humid but also due to me pushing myself a bit more than I should! I do stuff that I don’t think is going to be too hard and then when I am staggering about and aching even more I realise it was a bit harder than I thought.

That is one of the most frustrating things about my MS, thinking you can manage things you used to find easy and then struggling to do them. Of course me being slightly stubborn and not very good at admitting defeat means I constantly do stuff that makes me ache more! I guess I look at it as my way of  fighting against my MS.

The only way I can think to describe how my legs feel when they are not doing what I want them to do is how they are when you are totally drunk. The feeling when you are trying very hard to walk in a straight line and your legs decide they want to go in a different direction. I remember being like that a few times when I had been out drinking, only now I get the feeling without having had the pleasure of drinking first!

The pain and aching I can only compare to my long distance running days. They feel like I have done a 20 mile run and even though they have been aching like mad I have then run another 10 miles. That would make them ache really really bad and make them very wobbly, so I guess that is close to how they feel nowadays.

Like I said, it is difficult to think how to describe how they feel and I think that that is the closest I can manage.

The shop I work in used to be a hairdressers so they have some full wall mirrors still in there. Seeing myself staggering about and grimacing a bit with the aching is not a very good sight. It does make me realise how bad I am getting and how other people must see me on the rare occasions I let them see me that bad. I do try very hard not to let people see me that bad, but there must be times when it is seen.

A couple of Ibuprofen and sitting down resting for a while normally sorts me out, than I can try pushing myself again lol. I know I shouldn’t push myself too much but I have always figured that if I stop pushing so much then the MS will win and take over more.

Anyway enough of this waffling for now, don’t want to scare my readers off too much!

Rob

I thought I had covered every aspect of my MS but I forgot to mention Fatigue. It is one of the most common symptoms with MS, I am very lucky not to get it too severe. I get it when I have been overdoing it and occasionally need to have a nap to recharge the old batteries!

I suffer a fair bit when it gets really hot, I try to stay indoors when it is and use the air con if I have to. The humidity is the worst for me, it totally drains me and makes me ache all over especially my legs.

I’m not having too bad a day today. My legs were aching as usual this morning but settled down to a mild ache after 30 Min’s or so. I cleaned the swimming pool this morning, so by the time that was finished my legs were aching more and I was very wobbly. A swim in the pool and a good rest calmed them back down.

We had a small BBQ for lunch, chicken marinated in Smokey BBQ sauce with honey and some Halloumi on the barbie with a small salad and some roast potatoes. Very tasty and very filling! Legs were aching bad again by the time I had finished doing the BBQ, so took a couple of painkillers with my lunch.

Slightly cooler today, around 32c indoors and 36c out. There is a nice breeze this afternoon, so even when I go outside I don’t get too hot. Pool is registering around 31c so that is quite nice too, it was 27c at 7am this morning so that was nice and refreshing lol

Talking of Fatigue must have triggered it so I am going to finish this blog now and go and have an afternoon kip. If there is anything you want me to give more details about or you have any questions please leave a comment.

Rob :o)

Very humid day here today, so my legs are constantly aching quite bad. Even taken some Ibuprofen to try to help a bit. Not a great deal I can do when it is this bad, stay in the shade as much as possible and have an occasional dip in the pool.

It’s only the last 3 years or so where the weather has affected me so much. When we first moved out here and I was working everyday outside I don’t remember it being such a problem. I remember being out at work by 7am in a morning and working most of the day in the heat and not having too many problems.

Those were the days I would be cleaning 15 pools a day by myself and thinking nothing of it. Now I get knackered giving my pool a quick clean. I still think of myself as lucky to have had such a life as I have had in Cyprus. If somebody had told me 10 years ago that I would be here I would have laughed at them.

That’s probably why I just take each day as it comes. I’ve had a fantastic time out here, the sort of life I would have not even dreamt of years ago. We have lived in villa’s that I class as dream villa’s, the sort of places you see in flash magazines. The bungalow we live in now is probably my favourite place we have lived here so far.

I had a fantastic job, running my own business. I loved the work and got on well with all my customers. I still keep in touch with some of them. I think I did a fairly good job, I don’t remember having to many customer complaints.

When I used to have regular check-ups back in the UK, they would always ask me if I felt depressed at all and if I needed to see a counsellor. I never did and even now I am fine most of the time. I occasionally get slightly down, but even when I do it doesn’t really last very long.

Most of the time small things will trigger it. I was sat in the shop at work the other day and a guy in his 50’s or 60’s jogged passed the shop. That made me think of the days when I was a long distance runner, and would be out 4 or 5 times a week having a run. I realised that I would never do that again, I can’t even run to the loo now lol!

That made me feel a little bit down for a while, but it wasn’t for too long. Other small things will trigger me off as well. Friends posting photo’s and video’s of scuba diving is what gets me more than anything now. I loved diving and even now wish I could be out there every day doing it. Photo’s and videos were the thing I enjoyed doing more than anything, and I still have an extensive picture and video collection.

I don’t stay down for long and I love seeing the photo’s and video’s people post as it reminds me of how much fun I actually had doing it myself.

Time for some lunch, so will finish this blog now. I am probably going to go over a few things I have compressed in more detail soon so stay tuned! ;op

Rob

Well that’s the shortened down version of how I got to where I am now, hope I didn’t bore people too much! Not getting many comments so not sure!

My MS now. I’ll start from the top and work down.

Eyes – That’s were it all started nearly 18 years ago! I still get a bit of aching and blurriness in my left eye, particularly when I am feeling a bit tired or been overdoing things.

I occasionally get quite bad headaches, not quite migraine but fairly close. Again it’s when I am tired or been overdoing things.

Arms – I get quite a bit of numbness and tingling in my arms and I have lost a fair bit of strength in my arms. I get Spasticity in my arms as well now, which is annoying. The numbness gets quite bad in my hands sometimes, and I struggle to coordinate them when I am typing and stuff. Spell check is really helpful!!

Bladder – That is still quite bad. I take a tablet which limits frequency but I still get quite bad urgency. I still need to go as soon as the first signs are there but I get quite a bit of hesitancy as well now. That means I take a few minutes to go even if I feel I am bursting. I sit down to go to the toilet most of the time as I find it easier, and saves my legs a bit. I occasionally suffer from night time incontinence, so I now have a pad on the bed just in case. I have tried to see a Urologist over here but the tablets he kept trying me on didn’t work so I got fed up with paying money to see him and paying for the medication.

I still suffer from Erectile Dysfunction, but it has gone to sexual dysfunction which means I don’t very often even get the urge now! Bloody good job I’ve got a very understanding wife!!

Legs – This is the worst part of my MS. I have numbness and tingling most of the time. I have a fair bit of weakness in my legs now and I also get spasticity in them. I wake up in a morning and my legs will be aching quite bad, it takes a good 5 or 10 minutes for them to calm down some if at all. Some days it is a mild ache that I can pretty much ignore, other days I wish I had a chainsaw to take them off!

The numbness and tingling I have had for so long now I hardly notice it. I mostly get the spasticity at night, I will be sat watching telly and my legs will just be constantly twitching or wanting to be moved. It’s worse when I go to bed and try to get them in a comfy position so I can get to sleep. It still goes on in my sleep and Hales quite often tells me in a morning that my legs were twitching like mad during the night.

The twitching doesn’t actually hurt but because my muscles are twitching it makes my legs ache even more. I sometimes have to walk round for a bit to try to calm them down. Well should have said stagger around! I have quite bad balance problems which makes it even worse when I am trying to walk. I started using a walking stick mostly to help with my balance, but I use it more and more as support now.

I don’t think it will be very much longer before I will need to use a wheelchair, but it doesn’t really bother me. There is nothing I can do about it so why worry!

I occasionally suffer from a bit of short term memory loss and I also sometimes do word fishing. That’s basically when I know there is a word I want to use but I can’t think of the word! That has meant quite a bit of going back over these blogs as I write them!! lol

That’s pretty much where I am right now, I will start doing regular updates as to how I am doing and will probably find other stuff to waffle on about as well!!

Leave me comments, let me know if I am boring you with my waffle or not!

Rob :o)

I had sold the business and had no clue what I was going to do next. It was very strange to have finished a job and have nothing lined up to do next. I had always worked and not been out of work for years.

We were living in a dream villa at the time and decided to use the money from the sale of the business to remain there for at least another year. Hales was still working so we could manage OK on just her wages and the business sale money.

I was struggling to accept that I had deteriorated as much as I had, I wanted to just carry on working as I always had. I was feeling down quite a bit for a few months and could not get used to just sitting around doing nothing. I started going down to Pete’s and helping him out a bit on cars and I also helped Charlie out on a few of his fencing/pergola jobs.

My balance was getting bad and my legs ached a lot of the time. I was still constantly rushing off to find a bush or wall I could have a pee behind! There were a few times when I contemplated giving up Cyprus and going back to the UK. I knew there would be better financial help and support back in the UK, but was that enough to make me want to go?

In the end I realised it wasn’t just about me, Hales was loving living in Cyprus and really didn’t want to go back to the UK. She would have done it if I had really wanted to go, but I wasn’t really sure if I was ready to anyway. I finally figured out that I would rather be short of money in Cyprus than short of money in the UK! We had realised that there wasn’t much good happening in the UK so even back there things would not be great.

At the end of the year we moved to a smaller, cheaper villa. I had managed to get a couple of part time jobs, 1 working in a tour operators and the other helping out in a dive shop. I was still continuing my diving, but purely for my own pleasure and not really helping anyone. I knew I was starting to struggle more getting into and out of the water, and I got tired when I had to do long swims.

I was offered a part time job by Andy, who I sold the business, to in his pool cleaning supplies and chemicals shop he was opening. It would work out good for both of us as he would have someone in the shop who knew pools and could help people out. Good for me as not too much physical work!

At the end of the year I decided to sell my diving equipment as I knew I would not be doing much if any more diving. I had been having to get help with carrying my equipment to and from the water, and I knew there were several friends who were happy to do this. I had decided that I was starting to struggle a bit too much for my liking, and didn’t want to be a burden on anyone. I know they didn’t mind but it was my choice that I was ready to call it a day.

So I have been working in the pool shop for the last year and enjoying it, helping people is the best part of the job for me. We have moved into a really nice bungalow which is very close to the shop, so the days I am not feeling too bad I still walk to work. I use a stick now, mostly for balance but I am having to lean on it more recently.

Anyway, enough for now. I have condensed a lot of stuff to try not to bore people too much, so I might embellish some parts of the story in future blogs. If you have anything you would like to know please ask, and leave comments if you wish.

Rob :o)

It’s the thing I hate most about having MS. Of course I have aches and pains, but I can handle those. Frustration is by far the hardest thing to deal with.

Even small things get me frustrated, like not being able to walk more than a couple of metres without holding onto something.

So the bigger things like having to watch my wife do more and more as I am able to do less and less are massively frustrating.

I should be doing things like cutting the grass, but I just haven’t got the balance or the strength in my legs to walk up and down pushing the mower. If I could afford to get a sit-on mower then I would be able to do it.

Having to just sit and watch Hales do it all is really really frustrating, and makes me feel useless! I try to do as much as I possibly can but I seem to be able to do less and less.

Things I used to really enjoy, like driving are getting harder and harder for me to do. Scuba diving was the thing I enjoyed most in life, but as I got worse I had to give that up too.

I do sometimes look back through all my photos from scuba diving, and quite often I will be sat here with a tear in my eye.

I know that there is nothing I can do about it, it is what it is. I don’t let it get me down for long, there are people out there with much worse than me.

I do keep my fingers crossed that something is invented that will cure MS, or at least stop it getting any worse. But I am prepared to just carry on slowly deteriorating and I will face whatever comes along as I always do.

I am a fighter and no matter how much is thrown at me I won’t just give in and let it win. I will always keep the smile on my face as much as I can, and if asked I will say I’m fine whether I am or not!

Enough waffle for today

Rob

Things were looking good. I had my own pool cleaning business, Hales was extremely happy at being able to work on her own at home. We had enough money
to pay the bills and occasionally have a little left over to go out for a meal with friends. We were enjoying living in Cyprus and the stress of working in the UK
and all the debts we had amassed were under control.
My MS was slowly getting worse but I was enjoying myself so much I was pretty much ignoring it! The first year running the business was difficult as I had never
really been my own boss before. I gradually got the hang of it, eventually paying off Martin from buying the business. It was all mine and I was really enjoying the
job. Some days were long and I would be knackered when I finished but I got great pleasure from seeing how well I was maintaining the pools.
The second year was good and we should have had extra money, but problems with my car and extra running costs of the business reduced the extra we had.
I was starting to feel the effects of my MS more by then. My legs would ache more and I was nipping off for a pee more and more often. I would get fatigued easier
and quite often just wanted to flake out when I got home. Looking back it was around about that time that I must have gone from Relapsing/Remitting MS to
Secondary Progressive MS.
I was still doing a fair bit of diving and had found a new friend to help out a bit in Sylke. I had bought myself a good underwater camera and I found that I was really
enjoying doing underwater photography. I also made friends with Pete who was a mechanic recommended to me, and he had been a commercial diver so he soon
became a really good dive buddy. I was still able to do everything for myself diving but I knew I was starting to find it more difficult getting in and out of the water.
In the 3rd year of running my business I noticed I was starting to find it difficult managing so many pools so I decided to take on a helper. Everything went well
and I soon had them trained up and helping me full time. By the end of that year I was doing less and less of the work and paying my helper to do the pools on their own.
We eventually realised I was losing money as the business did not pay enough for me to pay all the expenses and pay for help. I decided that I wasn’t able to spend
enough time making sure the business was running well and decided to sell the business.
I had met Andy on a pool cleaning course and we got on really well. I knew he had his own business and that he was keen to expand so I decided to offer him the business first before I advertised it. It was a lot to do with the fact that I knew he would look after the pools as good as I had tried to. He accepted buying the
business and I agreed to take payment over time the same as when I bought the
business.
Think that’s enough for this instalment, more to come soon. Wont be long before I am up to the present day and how things are going now!
Rob

Thought I would have a day off from posting the old blogs and just have a bit of a waffle. Nothing in particular, just whatever comes to mind

It’s going to take a while to put all my old blogs back up so I will try to have a waffle day every once and again to stop people getting too bored.

Once I have put the old blogs up I will need to write a few more to catch up on the time between the last one and the present.

Quite a few things have happened since the last old blog so at least I will have plenty to write for a while! If there is anything in particular you want to know more about then just drop me a PM and I will try to answer any questions.

I’ve been looking back at the blogs and it is quite scary to see how much I have actually deteriorated in the last 5 years or so, even more so the last 6 months!

I won’t let it get me down though, I’m not that kind of person and I also realise it won’t do me any good anyway. It is what it is and there’s not a lot anybody can do to change it.

Some days are really hard, I do have times when I feel really down about it all. It doesn’t tend to last too long though, quite good at putting the smile on my face and just saying “I’m fine”!

I have the most loving, caring, supportive wife I could ever wish for. Hales is my best friend, wife, carer, soul mate and my absolute rock. The merest smile from her when I’m having a bad day is usually all I need to get me back on track!

I also have a really good network of family and friends who have seen my problems and watched me try my hardest to stay as positive as possible.

So there are way too many people that I feel I would let down if I didn’t keep fighting as hard as I possibly can

Anyway that will do for today, I will try to jump in now and again till all the old blogs are up to date.

Rob 😁