The Simplest things can heal…..

Lately I have felt lost and alone even with people around me. My pain of my MS seems to have magnified and suddenly I have found myself struggling to cope. I lay at night wondering how will I manage to get through another day of this nerve pain, and yes pain in my heart due to still grieving for my husband.

Nearly two years on will be on the 3rd October, still my heart aches for his loss and also the pain of my MS instead of sitting quietly in the background has suddenly become much more noticeable. Its very hard finding things to do now to turn the volume down, and I have found myself musing over the fact that what on earth am I making all this effort for? Really having had a wonderful life 30 years of it more or less with my husband at 68 what was left for me?

Mike and I with Lucy on holiday in IOW one of happy times

I am feeling so sorry for myself, many people out there are far worse off then I am. I could make more effort but being ill for so long its hard to break the habit. If my hubby was still alive at least I would have someone with me to share my worries and pain, but being on my own now its difficult as I dont want to burden my family with my moaning all the time. Stupidly in a low point in my life more through grief my monkey chatter persuaded me to leave my home of 28 years and move into a more secure place to be safe. I felt by doing so it would take the stress off my family for worrying about me, as being in a large 3 bedroom house with lots of rooms and a huge garden there were plenty of traps for me, to hurt myself.

So the house went on the market and I moved into my tiny sheltered/Independent living flat. I do have access to outside a bit of garden and my flat is located on ground floor and now no flat next to me on the left, so really I have autonomy to more or less do what I want with regard to making the patch my area.

A bit of my outside area I have made my own.

I have hand rails outside and they are covered in solar lights, my little area just twinkles at night with lots of solar lights, my aim was to make it look like a happy place. The bird feeding table went up but wasnt sure that being so close to my flat there would be any visitors.

Depression can come in many forms. It snucks up on you, and before you know it your immersed in it’s confines the voices in your head (I call my monkey chatter), who persuade you that your doing badly, you need to get a grip, everything it tells you is negative. If you listen hard enough it makes sense, and then your confidence starts to dwindle, your self doubt increases, and your feeling of despair becomes all you can feel.

I woke up one morning and thought if I was going to survive this new chapter in my life change had to happen but how? Walking is hard work, going out on my own is scary even on a scooter, because you worry that the tool you rely on will break down and you will be stuck.

Everytime I want to go out I have to ask someone to take me. That in itself makes me feel useless. “A trip to the garden centre is offered, they do not realise by offering me this it is just another reminder that I cant do my garden anymore, and have to rely on people. Looking at all the lovely plants where can I put them? I love flowers and plants, my home before was full of things, trees are my favorite, fruit trees. I love ornaments for the garden now my little space is full of them.

Some of my pots i have changed it since

Come on I will take you for lunch!”. It’s not because no one asks me but lunch ugh!. It hurts to sit for very long and at the moment I am cursed with the worse flatulence anyone can face. Having MS its screwed with my bowels and my bladder and two things I can rely on is the need NOT to go to toilet so wind builds up, and needing to constantly pee so when I do go out I have to make sure there is a toilet accessible. So once I have eaten my lunch the lower bowel decides to let rip, obviously being a lady lol, I have to hold it and this in turn gives me stomach ache.

Recently in my area in lovely Cotswolds the farmers were spraying their fields with liquid manure for the years planting and the aroma outside was to say the least a slight pungent lol. I could easily stand outside then I let rip and just blame it on them as believe me I could hold my own with the smell of my manure lol. I reckon if you could actually bottle it I would be able to light up my flat ha ha. Warning handle with care danger of explosion! So you can see the conundrum I face going out is embarrassing for me there is only so much wind you can hold back without an atomic bomb going off!

Wasn’t me honest!

Several years ago now having a reaction in my gums my teeth started to fall out. It was thought this was down to an overactive immune system. I had a few left and decided to have them removed. My rationale was to wear dentures, well I was a pensioner so done well to have kept my gnashers for so long. WRONG, I could not get on with them. After only a month my mouth shrunk and my new shiny teeth fell out. I found it really difficult to chew with them in, so Mike just said don’t bother Zen, I never notice anyway and to be honest you don’t look right wearing them. So for several years now I have not felt the need. So again going out for lunch is embarrassing for me, as it takes me so long to eat safely.

I would rather eat in my own space and not feel embarrassed or a fool. So its down to me really like I said family have asked.

So where was I oh yes, once more I was feeling pretty low, the pain was on a scale 10. Just imagine your body on fire. Literally. Every part of you burning. Its horrible and makes me feel sick. Every nerve in my body is alive and active. This is worse when it’s warm or I am tired.

Sometimes my body feels like it’s on FIRE

It was another morning of feeling despair and pain it was time to get up. Getting up out of bed and slowly stumbling to the back patio door to let the dog out, my mind sluggish thinking what will today bring, I open the blinds (I have a snazzy electric blind you just press a remote and it slowly comes up to reveal the outside. Lucy anxiously and excitedly pressing her nose to the window, “come on mum I need a pee”, finally blinds up and curtains opened to reveal outside. There on the grass eating like there was no tomorrow was a little hedgehog. I was so excited didn’t want to make too much noise as it might scare it off. It was way too intent on snuffling up food probably bird food to even notice me.

My little hog eating

I had no choice but to let lucy out, so sternly I asked her to calm and she did and then she was out the door crossing her legs, and went off to relieve herself. The hog never noticed and carried on.

I had totally forgotten I was tired, in pain with burning as I watched with my face against the window this little creature enjoying its repast of food. Suddenly I shook myself and grabbed my camera and managed to get a few photos. By then lucy was back. The cat had also gone out and came back in with Lucy.

I was shocked for minutes my body was ignored and I felt so much better. Could the simplest thing like a prickly round hog have changed my mindset so easily?

Once I was up fully I went hunting on Amazon armed only with a mouse I typed in hedgehog food, and found a lot of stuff good things he could eat as I didnt want him eating bird food. Next day delivery, lots of food with fly larvae, CLICK and DELIVER it arrived in 24 hours.

So the next day came, the blinds went up and guess who was there yes my little hog. I was so excited to see him again. I took more photos and a video, and Lucy good girl that she is just ignored it. My mind racing concentrating on holding a camera still leaning against the window to stop hand shake, again I actually forgot about my pain. Snuffle snuffle chomp chomp that hog could eat i had given him some dried cat food which it was obviously enjoying.

Later the next day the hog food arrived so I now had his hedgehog food, and he was there again. More videos, more JOY, it was a lovely morning too. Lucy had come in and so had the cat and I suddenly heard a really odd bird making such a racket. Never heard that before. Then to my right I caught a movement in a tree and there suddenly was a WOODPECKER, omg I was so excited. I managed to get a small video of it it was a green woodpecker.

I had never seen a woodpecker even in my other very large garden where I used to live. I could just see it on the side of the tree, and managed shakily to get some sort of video proof. Since that day I have seen him several times, he will fly in low suss out the territory if its safe he hops onto the side of the tree, if not he flies into the large bushes by the side of my flat. I always have pigeons they eat like feathered pigs and constantly hog the bird food. I also have a pair of collared doves. So delicate and pretty birds.

Sorry video of woodpecker was very short.

One day feeling low again I looked out of the window and there were new birds on the feeder. I had never seen them before. They were tiny with long tails. I held my breath in fear of scaring them off, but they stayed there for at least five minutes and I managed to get a photo of them. There must have been at least 5 or 6 all different sizes. Again intent on watching them, my pain dissolved into the background.

I had taken a good photo of one of them and was quite pleased and was able to identify them as Long Tailed Tits, there was a family of them. I read that they always fly in families. They visited me several days. I am hoping they will come back next year too. It was so exciting to see them, I nearly called out to my Mike as we used to watch the birds in our garden when he was alive. He would have been over the moon at this visit. He loved birds, and nature and was one of the kindest people I know. Not being able to share this made me feel sad and depressed. It has a two edged sword.

Long tailed tits a family.
An adult long tailed tit.

On the one hand excitement to see such lovely little birds I had never seen before then the realisation that the one person I would have loved to have shared it with was no longer with me.

Since the first day of my hog visit, every morning when I get up and open the blinds I am anxiously waiting hoping to see my hog or even some new bird life. I did take one video of the hog and then in my peripheral vision I saw above a balloon flying overhead which made my day even more exciting. (On the video above).

So what did I learn about all this? I have learnt truly that the simplest of things can be better then any drugs, the simplest of things can make the pain disappear, the simplest of things can lift your spirits, if you look for them they are there. I had stopped looking too intent on wallowing in my own misery to realise that outside my safe cocoon there was still life going on, new families being made, little creatures working hard to survive, everyone of them was busy busy busy, not only giving me happiness but a reason to carry on.

I have bought my hog a house and its tucked under the big bush, although I havent seen him outside he has been seen and when yesterday I checked his house the entrance the leaves had been flattened down, so something had been in there. I truly hope he uses it to hibernate as he will be safe. We are loosing so much of our wildlife now, destroying hedgerows, using poison to kill slugs, and with the weather being so hot they are thirsty.

Take time to leave water out for the birds and the other little animals and if you can afford it, feed the birds. Its been such a rotten year in the United Kingdom very dry and hot and birds and wildlife are thirsty and hungry as for example the slugs the hogs eat have dried up with the heat and this has meant their food source is a lot more limited so they are coming out more in the day searching for food, as they need to pile on the pounds for their hibernation in the winter.

Just look out of your window and watch all the life going on out there when you feel down and sad, it will give you a boost.

If we practice hard enough, we can become thoroughly interested in even the simplest things of daily life, the way a child would. The smallest things would become so meaningful, they might even be worth a few words or a photograph, whatever method you use to capture them.

Author John Dickenson

Gazania Kiss Orange Flame come out today with the sunshine.

Having MS have I been dealt a card which is called the Joker?

The Joker card

Sometimes I wonder what is Multiple Sclerosis? Is it just a figment of someones imagination or a trick by a sick and invisible entity. I mean really how can you be sat quietly at home just chilling out and suddenly for no explicable reason you have a tarantula walking across your forehead! No really that’s what it feels like.

I wont put up an image as I know some people have phobias over spiders. I can remember clearly trying not to panic as I assumed a spider had crawled onto my face, so carefully without panic got up and slowly scared out of mind and hanging onto my hand rails for dear life, walked to the mirror located in my hallway. Expecting to see this long haired creature on my forehead instead of which there was NOTHING! I could still feel it walking across my forehead. Jeez I must have been going insane or something. It was a horrible sensation. Quickly I washed my face, and the sensation did go away. It was warm I remember that.

This was a madness and period of my life when I suddenly was invaded by ants, and nits in my hair, and fleas running across my face. I got more exercise going to the mirror to see all these crawly things but never found one.

Invisible nits which made you scratch your scalp raw. Boy that Joker card was aving a larf with me. What else was he going to chuck at me.

I did have a giggle though when I found out what this sensation is called. Formication, my brain being my brain immediately went to the naughty step lol, but basically it’s a type of paresthesia. Paresthesia happen when you feel sensations on your skin that don’t have a physical cause. Paresthesia can take many forms. These can include burning, tingling, or numbness. With formication, you might also describe the “crawling” sensation as feeling like “pins and needles.” Formication is also called a tactile hallucination. This means that you’re feeling a sensation that has no physical cause.

Formication can be a symptom of several conditions. These conditions include  Fibromyaligia, Multiple Sclerosis and also Parkinson’s disease.

Oh yes also Withdrawal from alcohol or drug use can also trigger formication

So knowing what it was and it had a name kind of mind it easier to cope with but at one point I was totally paranoid thinking my house was infested with little crawlie things. Eek.

Another wonderful sensation was the biting bee. I was actually in the garden with my chickens when I suddenly felt a bee or wasp sting me really hard, jeez it made me jump out of my skin and my husband came into view just as I was screaming in pain, crying “omg omg omg” I have been stung by something, as I hastily started to drag my trousers off myself trying not to fall over to find the offending perpetrator of my body. Mike came rushing up to me to help, and between us we managed to get my trousers off but nothing fell out onto the floor and there wasn’t a mark on my leg where I felt the bite.

No way how could that be? (bee get it lol).

This was getting ridiculous now. I was really being dealt the Joker card, what was going to come next I wonder.

Have you ever stood say in the kitchen and feel someone is looking at you from behind? You just have that feeling that there is someone there and kind of hold your breath because your scared to death to turn around, then suddenly you actually feel someone push you? Now it was either a spirit and I can assure you it wasn’t an alcoholic one or it was another weird symptom perhaps some sort of spasm, but I swear to god I had been pushed although I never actually moved.

Ah the joys of MS.

A new one for me was trickling cold water down the back of my legs. Yep this is true. I again would be minding my own business and going about my day probably just musing about life or something similar when suddenly the back of my legs would actually feel wet and I could without doubt feel what was like water or wet going down my leg. Well for someone with a disability I could sure move when the needs must and lucky for me I was stood very close to our downstairs toilet. Making a Beeline for that as I assumed without realising it and with some horror at myself had peed. Expecting to see urine soaked underwear and the back of my trousers wet there was NOTHING. Nope all dry and nicely groomed where I left it all in the morning after I had my shower.

Now this only really happened a few times and it was earlier on in my journey. I did read about a disease that is mistaken for MS or vice versus called Arachnoiditis, but for me I feel as that is caused through nerve problems in the spine perhaps this had caused it for me. I belong to MS groups and have read others who have also experienced this with MS. If it had happened more often then perhaps I would have been worried, but I did mention it to my neurologist and he just looked at me and smiled and with a reassuring pat on my hand told me it was all down to my illness.

Weirdly enough one of the first symptoms that presented itself to me at the beginning was the strange sensation of wearing wellie boots running through a frozen field with a hole in your wellie, and freezing water making your toes feel like they had frostbite. Now that was a great one and I was convinced if I looked at my toes they would be encased in ice lol.

I did mention these things to my neurologist who said they were all forms of parenthesis.

To be honest writing this down I am feeling like some sort of nut job lol. I mean how can all these weird things happen to me or do they happen to others too. I don’t remember playing a game of cards or actually being handed the Joker card, but somehow somewhere I must have really ticked someone off, as even though these symptoms were not in themselves serious they were driving me mad.

I know I am not the only one who suffers with all these things and thankfully that is kind of comforting to know.

One of the worse ones I had though was the pain in the front of my shin. Usually my weirdo symptoms exhaust themselves very quickly and disappear as mysteriously as they came, but the shin pain was horrific. I remember at the time pushing myself to walk more with my dog. This was early onset. When I got home and was just resting on my recliner the pain started. I swear to god that someone an invisible entity had stabbed me in the front of my shin with a large knife. The pain was so intense I grabbed hold of my shin and shouted out and nearly scared mike to death. Now this pain lasted days so bad was it I really had to see my GP. As usual I got THAT LOOK, and yes you guessed it well it was down to whatever was going on with me at the time. I was told to take paracetamol and rest.

Thanks doc, so I did, and roughly 2 weeks later it finally had gone, just like it came.

Oh dear the bee is back. Yep I must have wished it on myself. At the moment living in my little sheltered flat I am trying to make an area outside which makes it more homely or like the home I left. On one side is a border which was so neglected. I had asked if I could maintain it, and was granted permission, so all the old overgrown plants which were so neglected were removed by my gardener, and the ground was given a good feeding. I decided to turn it into a little bee garden by having planted only plants that would encourage bees. Within 2 weeks I saw my first bee and was quite excited I know right I live such an exciting life. But there was the little bee, flitting away busy from Borage to flowering Thyme, gathering pollen to make the honey.

Since then I have had more and more arrive and I believe its like one is the scout who goes back to a hive and communicates that there is a bounty to be had follow me boys …………

Bees off to feast

Ah where was I oh yes, the bees starting to come to my area and I love watching them always so busy. Then just a few days ago the biting came back. Sting, sting sting……….. on my knee of all places really bad. I did lift my trouser leg up but in my heart I knew it was just an hallucination another Joker card, like he was saying “you want bees………….well your going to get bees”! There they were like magic back on my leg biting me.

Fleetingly in my brain I wandered is it true you get what you wish for? I am not scared of it now though, and just ride it through until it decides to try something new the last attack was yesterday after being at the neurologist and the heat was exhausting, so I wonder what will be on the cards today…………………..!

If you’re reading this with MS and suffer similar please share as we are not alone.

Try being disabled for a day and not feel excluded from normal life……

I am disabled right, according to The Expanded Disability Status Scale (EDSS). The EDSS scale ranges from 0 to 10 in 0.5 unit increments that represent higher levels of disability. Scoring is based on an examination by member of the medical team or whoever is dealing with your disability.

I believe at the moment my scale is 6.5 and I am aiming to stay there as long as I can.

6.5 Requires two walking aids – pair of canes, crutches, etc. – to walk about 20m without resting. I use a rollator for me is the same as two canes.

I want to live as good a life as I can. I bought myself an electric wheelchair and my friend would take me out in the car and we would go off shopping. I remember one particular day we were in a famous store to look at some clothing. In minutes i was totally tangled up as the rows of clothing were not wide enough for me to negotiate through the aisles. It was really frustrating for me. So we went to another shop and similar happened.

I was beginning to think i would never be able to buy anything, and really sadly that is why i confine myself to the house and buy online as it is so much easier, but it does limit my life and isolates me even more.

Oh then the supermarket smack bang in the middle will be a load of metal baskets which stops you again from moving around them. I mean really.

Ok so off I go for jolly jaunt around town. There is a pavement with a canter lever which slopes right downwards and you have to take you life in your own hands to negotiate it. Not only that it also has Blister tactile squares, for the blind, and this makes it even harder in a wheelchair or scooter. I have nearly come foul with this bit of pavement and ended up in the road, lucky for me there was no cars turning right or left into it.

Ah then you get to the shops and you want to go into them even the bank on the corner before it closed had no ramp for me to get in so i was excluded from going in there so ended up once again relying on the Internet to do my banking.

Even in 2019 shops are ignoring the rights of disabled people who have to use tools such as rollators, wheelchairs and scooters. It is hard enough being disabled but why should we not be able to go into shops easily. Many never provide you with wheelchairs which would help a lot.

Then I thought to myself i really would like a new scooter one with a cover over it so when it rains i can still get out and about. So I did a lot of research, and found one a really nice scooter with a canopy which can be moved back and stored behind your seat, and if it rains, you can simply un-pin it and cover yourself (Scooterpac)

Sounds so easy doesn’t it. Like having a convertible and taking the top down or over yourself.

You can choose to have the cover on or off. The scooterpac is a great invention to be honest, as the idea is it can be stored behind your seat then when it rains you simply pull it back over yourself.

So when you watch a video of it well it looks pretty darn good and easy.

So they use a young women on the video I watched, she made it look all so easy, and I suppose to be fair if your not weak on the upper part of your body it really would be.

The first thing you have to do is take the cover off the scooter pac which was exhausting as it was very tight. It’s there for protection and to keep the actual top tidy and secure.

Now why oh why oh why do they not use a DISABLED PERSON to show the demo? I mean seriously. I was stuck and it was exhausting as i had to pull this canopy over and it was high and my arms were tired and exhausted. To fold it back away did not work for me as the person who had fitted it put the sides on the wrong way. Once that was sorted(I had to get the scooter company out as no one could do it not even healthy people) trying to fold the sides and secure them to the back was really difficult for me. Oh and having to put the cover back over the top cover of the scooterpac was a nightmare really hard to do. Very tight and I ended up getting my young lad who was decorating my flat at the time to do it, and honestly he will confirm even he had a struggle with it.

If your not too disabled the Scooterpac is a really great idea. I would have loved it but trying to put it away was just too hard for me. A really great idea i would highly recommend it, but if your very disabled you would be better with a cover that stays on.

So well now I had my scooter sorted it was time to go out into town. I was excited but then I hit the first obstacle?

Getting out of the park where I live.

Both ends of the park you have to negotiate one of these.

The shape says it all, my bottom can pass but the top of me has no chance. The large gate is locked also only for council.

Let me rewind. I need to go down into the local park to take the dog for her walk, and before I changed my scooter for a bigger more reliable one, I could go into town even by negotiating the above bollards. But the access to the park even that is a chore as there are two sets of gates. The last gate is a nightmare as its tall and you have to find a way to stand a bit to open it then of course it opens INWARDS not outwards (I mean really who designed these gates for disabled living quarters). They obviously didn’t have a clue. Now I have my dog with me, and doing this is heart stopping as I am always frightened I am going to run her over, but she seems to have learnt self preservation thank god.

A picture of my first obstacle double gates which you have to negotiate on your scooter.

First obstacle a gate on the right which is surrounded by hedge.
Sorry about quality. Its hard to hold onto a scooter and a dog and a camera.

Next obstacle is a tall gate as I said above it opens inwards. See video above as I have included it at the end of the video. Now once you get through it safely and close it behind you then you are in the park. BUT If you want to go into the town you are immediately stuck as the barriers are not big enough to allow me through (I am not the only one who lives in my flats who cant get out this way).

This is what you come up against its access to the town well its a barred access to the town as i cant get through it with my new scooter.

Please see video.

Once we finally get through the tall gate though if we are just going for a walk we have a lovely time going around the park and she enjoys it.

The barriers. Now the idea of these barriers I believe is to stop motor bikes and bikes. or odd shaped people from entering. WRONG, as every day I see bikes in there and on occasions there are motor bikes at night using the grass as grass track race. The point is down the bottom corner is an area which is OPEN but has a rock in the middle so I am not sure I want to try going that way but motor bikes have no problems.

Surely there must be another way of stopping the nuisances but also allow the disabled a right of way to live in their town without difficult obstacles I wonder how other towns deal with these issues. Please share good practices please.

OK YOU COULD if you wanted to go the long way round. It’s a long path which is so uneven and full of holes and dips and slopes, you take your life in your hands. By the time you get to the bottom and closer to town you feel like you have been in a roller coaster. I come home feeling awful. Even with a scooter with good suspension you sure get a bashing about and I wear my seat belt as sometimes with the slopes you feel like your going to topple over (I know that I wont but its difficult when you are trying to stay safe with pedestrians around and a dog who is walking by your side. When I finally get home boy I feel like I have been in the gym as everything aches.

Going long way round.

9 minutes walking the path is very uneven and hard on your back
quick way is actually quicker then map states. I just go through the bottom tall gate then a few minutes into the town, but i can’t get past the barrier anymore with my new scooter.

Then the scooter its really well made. Excellent. But it is too much scooter for me as I am very weak in my arms and found it hard for me not to loose grip on the tiller as it was very light touch and any bump I would loose grip which is quite scary.

Any manufacture of disabled products should ensure all their products are tested or displayed with disabled people. Every persons disability affects them differently.

Councils perhaps you should get someone not disabled to road test your towns, and shop keepers do the same too. Just walk or ride in my shoes for one day and you would soon learn just how disabled friendly we really are. Ok you get points for certain things but ultimately you are excluding us from having a normal life as we could possible have, as really its off putting struggling to get in shops time consuming and frustrating that a lot of disabled people now dont bother and spend more time at home or on their computers buying on line, rather then going to the local shops, because at least buying on line you get treated with respect and every delivery driver i have come across has been amazingly helpful and kind.

I never asked to be disabled I just want an easy life, i don’t want nor do i need any more barriers thrown at me. Next time you want to design something for example like the barriers in parks just remember that a disabled person may have to negotiate it. You should think disabled first before you decide to do these things as there are 11 MILLION people just in the UK who are disabled.

Sadly everyday more and more people are becoming disabled and its up to local authorities and manufacturers to get mobile and disability friendly in order to allow us to have a good and enjoyable life, not one which has barriers chucked at us like bad pavements, poor management in shops and unfriendly disabled aids which have not been tested by the exact people they are designed for.

We are disabled – BUT should we get over ourselves?

I have thought long and hard about writing this but it is no good it is really bugging me. I hope that whoever reads this does not find it offensive its not meant to be, but its my way of trying to find a perspective into something that is constantly being dragged up on forums and groups.

What is it? Hum well have you ever gone out say to the shops and noticed anyone looking at you in an odd way? Maybe you think why is that person looking at me like that?

Nearly every week I go on forums or groups and there will be someone on there literally “spitting feathers and full of indignity”

Angry and indignant (not thirsty).
Drawing by Hannah Scully .

Now you would think World War III had started. I would have an image in my head of some person with arms under their breast standing there and taking real offence………. I am drawn in to the conversation as it seems so intense something awful must have happened to induce such a vitriolic and angry post.

It would sometimes start with…….. “How dare they look at me like that? (Hum reading on thinking this might be juicy), who do they think they are for gods sake”! I could literally feel the fire of anger coming off the screen…what had this person done to illicit such a response…… holding my breath I would carry on reading.

“The nerve of the them. I was just walking into the supermarket with my walking stick, and this moron standing in front of me, looks at me like I am diseased or something and steps out of my way and the look they gave me was disgusting like I was dirt under their shoe, just because I am disabled and use a stick how dare they look at me like that………….”

I know my brain is very slow and it would take a few seconds to comprehend what on earth this person was moaning about.

It would seem the person had some how purposefully or inadvertently given the impression that they found the look of their disability as distasteful or not real, perhaps the person with the stick was some how playing games and just doing it to get attention or money off the state, who knows, but the writer of the piece would be so mad one would think they had been physically assaulted.

I have had a think back about times when my disease first got so bad i needed a stick and an arm to lean on. I would go to the supermarket and by the time I got to the check out would be exhausted and out of balance.

I had often stumbled and needed to hold onto my carers arm to stop me falling. Yes I would admit that someone in the queue by the side of me would look at me with a look of sadness which would prompt me to say “oops I need to put more water in my gin in the mornings” and this would break the ice and the person would smile and giggle with me which broke the tension of the moment. I would always turn these awkward times into a scenario where one could laugh and smile alongside of me. My illness never made me sad, frustrated yes but never sad.

I was proud actually that even though I had a life changing disability that I could still go out and that I could still quip about it and interact with people to show them well there is nothing to be scared of not really, hell no I may have MS but I am not dead yet there is still life in the old dog yet lol. Below just a few photos of me over the years of having MS, I just got on with it, and never bothered about what others may have thought. I never stress over what I cant change.

I kind of felt sorry really for the posters as my feeling is they were not angry at this person but more angry with themselves and what was going on around them, and it was their way of dealing with it, by focusing on a tiny thing that may have happened and turning it into a major incident. Maybe a need to be noticed perhaps, for people to feel sorry for them, or even feed their insecurities about their disease.

After thinking about it I realised that people with MS or any other chronic illness can be very insecure, and some of them needed to be supported but didn’t know how. So they use the media to feed it to feel loved and supported.

You could almost imagine them sat in their room lonely and sad, lapping up all the answers of support, lapping it up like a cat would lap up a bowl of tasty cream. The person who had unwittingly looked that way, would never know that they had caused such a drama which would be unfolding and getting more and more intense and down right nasty towards them.

Image by Ruca Souza

I am sure they would have been horrified. Its almost like someone being stoned like in the days gone by, but verbally a trial by media. It would almost become mob rule as other posters would get wired up and angry for the first poster.

In days gone by people would be stirred up by verbal communication and things could get pretty nasty. Now its all down to lonely people living in their own seclusion feeding off each other the object of their hatred was not known or seen, but it didn’t matter not really as they could feel for the poster as they too were in the same situation and perhaps similar had happened to them too, so a simple moan could turn into hours and hours of posts from all over the world.

With the Internet you can start a post at night in the USA and it would be picked up some time in the morning for example in the UK, then posters would pass on their thoughts, and come the afternoon in the UK it would be the morning in the USA etc, and so that one small post could be doing the rounds for many many hours all over the world and getting bigger and bigger. At least in times gone by you reacted and it was done and dusted there and then. I feel now its so much more unhealthy. We tend to hold onto our anger and never let it go which cant be good for us surely.

Then just when you thought it had calmed down someone else would find the post and kick it off again, and indignity would reign once more around the satellites…….

Stone throwing the old fashioned way.

An innocent glance taken totally out of context had been used to feed someone else insecurities. Perhaps the indignant person needed to GET over themselves and find a life………yes they were disabled they had been given a rotten calling card but they needed to learn to deal with it for themselves not stir up a emotional feeding frenzy by others in the same place. All these people responding for me feeding the insecurity were the same sadly.

Life with a disability doesn’t have to be the end of their life but the start of a new one with lots of challenges yes, but we have to choose our paths in life. It is so much easier to take the easy path of just not dealing with it, and passing it all onto someone else and live the rest of our lives indignant because someone LOOKED at us in a weird way and make a huge thing about it which would feed us for a week and prop up our fragile egos.

As Humans I believe we are an innately self-absorbed species. Partly down to the fact that we have an instinct for survival. Could this person who is sharing this awful experience on say Facebook be using it as a way to survive another day. Using this exaggerated incident to enable them to cope through their own day, isn’t this a bit selfish really?

This could be dangerous unintentionally. There are a lot of people now living with a Mental illness who also have alongside a chronic illness they have to deal with. By sharing this story it could unintentionally stir up someone else who may not be as equipped to deal with it. It could even stir up hatred to all things NORMAL.

We have no idea how fragile minds are and the Internet is now a breeding ground for many things some of them not so good. By Normal I mean a focus can then turn onto someone who unwittingly one day looked at someone and without realising it set off a chain of events, because they appeared to be a “normal” person with no visible disabilities…………….

This doesn’t mean they have no disabilities just that the poster couldn’t see any, but perhaps their innocent look was of sorrow, or they may not have been looking at the person but through them as they were reminding themselves of something that happened to them that day. DON’T assume they were looking at you in a bad way.

Perhaps if you are reading this just be aware that if there is an issue with someone LOOKING at you in an odd way, look at yourself, and how you deal with things in your life at that point in time, and keep it to yourself, as innocently you could be putting other peoples lives in jeopardy.

You see that look, the best thing is to Stop Take a deep breatheThink of something funny – move on.

We all need to learn to GET over ourselves, yes we are disabled, but we are not a unique species with special privileges in life, we have to learn to deal with what we have been given, and not expect others to prop us up, as these same people may be more disabled then we are, more fragile then we are, and more scared then we are.

Let us all try to be a bit more tolerant of each other. We are humans and we are all just trying to survive the best we can, we don’t need to be stirred up and stressed to support someone as it just makes their day worse too.

Your needs shouldn’t always come first. Just remember whatever you post on media can have a ripple effect that leads to a tsunami, be mindful that others may be way more fragile. Just try to look at the funny side of things. Make yourself laugh, and the incident will just fade away.

I have another saying too when someone says to me “well you look really well” and I quip back well why shouldn’t I? I am not ill I am just NEUROLOGICALLY CHALLENGED, and it makes them smile and they know I am ok.

If you really want to be happy, you need to take a step back. You need to engage with the people around you, and with the rest of the world. Because this individual focus really isn’t working for anyone. Certainly not for you as it just leaves you having a bad day and a constant reminder inadvertently that yes you are disabled………. Turn the computer off, get out of the house, sit in the sunshine, do something, don’t focus on the bad things in your life, look around you, there is beauty you just need to look for it.

Beauty is everywhere you just have to open your eyes.

A mug of Hot Chocolate a day….helps fight MS fatigue.

OK now really when someone said to me that hot chocolate could help fight my MS my first thoughts were of the hot sultry relaxing group who I used to listen too years ago…yes if your my age you might remember them, Hot Chocolate. They could help me get over my MS any day lol.

The original lineup. The amazing Hot Chocolate band.
It started with a Kiss

Oh those were the days. Hot Chocolate and much less calories…..

So now researchers have come up with a small group of people who have tested the theory which seems to be for the idea. One cup of high flavonoid hot chocolate a day may help keep the old MS fatigue at bay.

Really could it only be that easy I think to myself. So its off to Amazon to do some serious Hot Chocolate purchasing to test out this theory. Anyone want to join me?

I decided after some research to go with Green & Blacks as their coco content is 97%. I am making my coco with coconut milk as I hate dairy milk. So I will see how I get on. Its a bit errrrr strong so added a bit of sugar.

I am thinking if it helps MS fatigue then why not all types of fatigue for others suffering with Fibromyalgia, M.E. CFS the list is endless.

If you want to read about it well it explains it here.

Bottoms up…….. chin chin and all that let the calories begin and the fatigue diminish………….

Bottoms Up, who knows after two weeks of drinking hot chocolate I too may be able to do a hand stand.

So who is with me on this challenge…………………………

Feeling deserted and alone…….

February 2016 was an horrific month for me. I lost my beloved mother on the 21st  and then on the  24th I went to see my neurologist and he gave me the news I had been waiting to hear for so long, you have Primary Progressive MS.  Too late to tell my mum what was wrong with me, even though we thought it was MS.  

My neurologist and I had been together 10 years. My neurologist had always felt there was something like MS going on but was unable to give me a firm diagnoses as there was a protocol to go through called the McDonald Criteria.

I kept missing it by one point then on that day finally the last piece of the jigsaw had come together and he was able to give me a life changing diagnosis.

The last piece of the jigsaw puzzle. I did have MS.

A label.  I was numb anyway couldn’t feel much because I was grieving for my mother still in shock over her horrific passing.  I almost hugged my neurologist because of my emotional state.  Basically his parting words were to me, your strong Mrs Trim, if you need anything talk to your MS nurse, and keep your doctor in the loop. So far I have never seen him again.

MS Nurse. Ah the invisible helper. You can if your lucky get hold of the elusive MS nurse who sadly is so overworked they are rarer then hens teeth.  We are blessed with two I believe for a large area a big city who has to cope with so many people. You ring them if your feel anxious about something.  Firstly you have to be assigned one. I had been apparently; but typically I was lost in the system.

I felt deserted by the NHS. I was told my life is officially changed, you have a progressive disease go forth and deal with it. I felt like someone had plonked me on a desert island and i was just sat there watching my life fly by.  It took a full year to finally be assigned an MS nurse it was my new doctor who pushed for it. I saw my MS nurse just before my husband died in October 2017.

Well that was an experience. Off I went on my appointment. Basically to be told very little. I had been coping with eye issues really bad.  The MS nurse decided to check my eyes by using a colour screen chart they use for colour blindness. Now that was a hoot as he was colour blind himself, so my care worker at the time had to keep him informed of what the colour was. I did mention this before in one of my other blogs. They use these to see if you can see the number.

colour blind testing

I gather that I failed the test and he told me that for the last few months my symptoms would indicate another attack of Optical Neuritis which had been totally missed by the GP.  The only thing you can do for this is steroids but it was too late for me so I had to expect about a year of on and off symptoms, which well yes I actually did get lucky me.

Who knew a diagnosis of Primary Progressive Multiple Sclerosis would leave you feeling alone and frightened. I kind of knew what Robinson Crusoe had felt being stranded on an island waiting for help and it never ever seeming to arrive.  Yes that was fiction mine is reality which makes it all the worse.

Finally another occasion to see the MS Nurse in 2018 I was told that an appointment would be scheduled for me to see my neurologist in March 2019 to discuss the new drug for PPMS sufferers.

Ocrevus (ocrelizumab) could be my saviour, help me to slow down the progression, so obviously it was HOPE for me. Maybe finally I could get off this island and join the human race again.   I waited for notice of a pending appointment nothing.

Then I read on a forum for MS sufferers the news………….

The NHS will not fund treatment with Roche’s recently-approved multiple sclerosis drug Ocrevus, even though it is the only treatment for the primary progressive form of the disease.

The final appraisal document from the National Institute for Health and Care Excellence (NICE) has caused consternation among patients – and an immediate petition from the MS Society – for Roche, NHS England and NICE to reach an agreement that will allow the drug to be covered for PPMS.

It was down to MONEY again. It cost too much, never mind the cost of human suffering. We were to be denied a possible drug that could make our journey easier. Money we were not worthy of such a sacrifice. It made me so mad. 

I believe that is why so far no appointment for the neurologist as he knows there is really nothing he can do for me.

So what now for me and hundreds of other sufferers of Primary Progressive MS. Do we just sit drifting along for years whiling away our days hoping for help to arrive?  I feel like the lost.  Its all down to money the price of life.  Its available if its PAID for but costs thousands of pounds.  It is thankfully available for people suffering with RRMS if they are in the early stages.

I know the chances of being accepted for this drug were pretty remote as it’s designed more for early stage PPMS but someone out there may have been a great candidate for it and benefit from this drug.

In the meantime I have done all I can to help myself. I have read everything I can about my illness whats good what is not, tried to stay positive.

Primary Progressive MS is really pretty much unknown about. Its one of those ADD on branches of a disease.  Therefore not so much research done about it.  I know more people now being diagnosed with it, so perhaps it is time the powers that be start to deal with it more. You cant just dump people on top of a scrap heap without at least trying to help them.  10 – 15,000 people in the UK are now being diagnosed with this disease. So basically 1 in 8 people will be waiting to be diagnosed.

Yes I feel deserted lost and alone. Thank goodness for friends and family is all I can say.

I know there is more research going on and hopefully in a few years people newly diagnosed will be helped more. Thankfully this disease can be slow to progress and even you can have a period of feeling better. Like it goes into idle mode.

I used to call this this stage the eye of the storm. I would say to my hubby the eye of the storm is here and I am smack bang in the middle as my illness has suddenly gone all  calm, my legs have no spasms even, like for a few minutes a little longer if I am lucky all is calm at sea and I can see the light through the doom and gloom of my illness.  

The eye of the storm.

Then BLAM……….. havoc. Suddenly the disease will come out of its idle stage and goes nuts for a few days like it has to catch up on all the pain it has not given me.

Stupid disease, sometimes I would rather it just get on with it.  I know silly to say but you just don’t know where you are with it.  I haven’t had a truly calm moment for several years now, just more or less at the same level so I suppose in a way that is good. 

After my husband died I did go down hill fast but in the last six months thankfully I feel with positivity and less stress I am on an even keel.

Right I am off; my island is calling me, I shall while away my days in quiet contemplation of life, and chill out listening to music and wait, and wait and who knows maybe one day a brown envelope with my name may come plopping on the mat and it will be from my neurologist to finally ask to see me………….

Who knows maybe there will be a letter today……

UPDATE. 19th July 2019. Finally the letter came and I saw my neurologist on Tuesday 16th July after THREE YEARS. It was a good appointment. He was very welcoming and sad to hear about my husband. Anyway he offered me a chance of Ocrevus but said it was a long road to find if i actually would be able to go on it, and yes my age was against me. I have all the stuff to read about it, but feel its too late for me, and I am not comfortable with the side effects, and the warning that if there is breast cancer in the family the chances of it are made much higher if i start this meds. It also stirs up your autoimmune system and leaves you more open to stuff like, flu, herpes, hepatitis, shingles the list is quite vast.

I am not sure that I want to take all these risks. I live in sheltered and a lot of people get sick in the winter here a lot of them being elderly so I am more open to catching something.

I have decided though if you want support you wont necessarily get it from the NHS. You need to join forums, start a blog, if you have MS join the Society and go for meetings (a bit like joining the AA lol), join on line groups and hope too your family will support you through this life changing disease. BUT remember that everyone has their own stuff to deal with and may not have time to help. Find a hobby, if your younger then get out with friends and have a life. MS is not going anywhere, so we might as well get on with our life as best we can.


So finally NICE have approved this medication for PPMS. I dont think I will be able to get it as my EDSS score is 7 not sure how long i have had it, but great news for those PPMSers who have just been diagnosed or recently diagnosed as its a start. A start a hope to get better. I am so relieved for all my friends with this disease.

Thanks to Caz who runs a fabulous web site for Chronic Illness

Its very informative.

Helping to cope – comes in many forms.


Ok all those reading this blog hands up who has an animal, a cat, dog, hamster, bird, horse or chicken etc?

I am a firm believer that animals can help us when we are suffering from a chronic illness like Multiple Sclerosis, and other long term diseases.

I needed to find something to get me up in the morning. That was my challenge in life, to get up. Everyday come rain, snow or sunshine. I knew without it I was doomed or lost. Yes I had a hubby but he could take care of himself and was away a lot with his job, so I was left on my own.

I had my trusted Lucy dog who was always by my side and I knew that she needed a walk, but to me it was earlier that i needed to get up.

My Lucy waiting to go on her walk on my scooter

I had my first chicken when I was 10 years old. Sandy. We lived in Malta at the time, and I used to care for her and only I was allowed to collect her egg everyday. The memories of her came back to me, and the idea formed in my mind well why not have a few chickens. So that is what happened.

My first 4 chickens.

I purchased four hybrids, and it was a lot of fun but also hard work. Every morning at dawns light I had to get up and let them out, feed them and clean them. It seemed an endless chore but I stuck with it and soon was rewarded with lovely fresh eggs.

Now it wasnt the cleaning, or the feeding that ended in me having to move them on, it was their noise. They constantly argued with each other, and when they were ready to lay an egg would let off the worse screeching noise you could imagine. I had no idea at the time that one of my new symptoms of MS was going to be hypercusis!

Suddenly from no where their noise became upsetting, painful to me and when they were really loud, I felt irrationally angry and tense. I hated the sound they made, and instead of being therapy for me they became my own worse nightmare a living hell of NOISE. Amplified so loud my head hurt. I spoke to my neighbour and she said she could barely hear them, which shocked me, as to me they were like having army manoeuvres in the garden with tanks and guns it was so loud.

Noise became my enemy

I really tried to keep going but in the end it felt as though my ears were going to bleed with the pain of their noise, and sadly my hubby moved them on for me, they went to one of his friends who had a huge house and garden and chickens, and they went on to live good lives but I felt I had failed them.

I took a break from fowl, I felt so depressed over it, and it did make me sink into a period of dark despair. What else was this disease going to take away from me. I still had my beloved Lucy dog who seemed to sense that noise was not what mummy needed and she never really barked and was very quiet and calm next to me. Now at this time even the television became a chore, my husband talking too loud, so many things would set me off, and I realised that I did in deed have an issue.

I spoke to my neurologist and he told me I was suffering from hypercusis, and the best way to deal with it was to slowly bring sound back into my life and set a level I could cope with. Over time I managed to achieve this, and as long as i wasn’t exposed for too long a level over that, I could cope.

Now back to animal therapy. In view of this in my mind I thought ok, so if i start with young chicken, a chick perhaps this will help me get used to their sounds on a lower volume, so we purchased a lovely selection of pure breeds, Poland, Dutch Bantams, Pekins chicks just a few days old. They were so tiny and sweet, I fell in love with them, and they slowly grew up strong and well and yes I did get used to their noise as it started low and my brain adjusted.

A little Pekin chick so cute.

I become obsessed by chickens. My husband loved them too and I found looking after the chicks a new therapy. Being able to care for something that needed me totally. I had to get up, there was no denying that fact they don’t clean and feed themselves.

My house become a nursery. We had incubators in the spare room, and I bought special equipment for them to make sure they had the best chance of life. My kitchen island in the middle of the room had 2 large dog cages on top and many a chick was brought up in there. I know its like mad yeh! I started my own incubating business and helped others by hatching rare chicks. My success rate of survival was nearly always 100%.

A little cream leg bar (blue egg layer boy) hatched for a friend
Not too obsessed 4 brooding boxes full of chicks.

I even had to become a chicken vet, and learn fast on how to deal with weak chicks and chicks in trouble. Its amazing what you can find on Google and youtube. It had gotten me out of a few sticky spots when dealing with hatching chicks, some hatch so quickly and others can take a day of anxiety and waiting. Like being in a maternity ward waiting for babies to be born. Watching chicks trying to hatch was an amazing experience, and seeing them when they had hatched slowly dry out and get stronger and stronger, and look for their mummy, for food. A chick fowl is one of the only birds which hatches and is totally self reliant. It soon learns how to drink and eat. Its truly amazing to see them.

Chicks a few days old, eating and drinking on their own.
Breech chick in real trouble

The chick above in the egg was in dire straits, it was in breech position and could not tap its way out. The experts say leave them to die as they will be weak, but I couldn’t do that. I spent hours with this chick and slowly slowly peeled it out. This was a beautiful Buttercup fowl they are pretty rare and really I didn’t want to loose it. Below is an image of it all grown up. Yes it was a boy but being rare he got a good home with another breeder who needed new stock.

It turned out to be a boy

I know I did go silly, and it finally drained me so I had to cut back. BUT I loved it and really missed it when Mike died. I could never have done it without his help.

Even Lucy my Jack Russell got into it and would protect the chicks and even watched them in the incubator as she could hear them in their eggs chirping.

Lucy checking the chicks these were due to hatch. She could hear them.

Lucy also became the protector of the chickens, and would often sit with them in the garden, they trusted her completely. This is Lucy sat with one of My Poland.

Life was just one round of cleaning and feeding but boy I felt good, yes tired exhausted but my mental health was great I could really cope with my illness at this time was still not diagnosed.

I actually felt useful again. Needed, I had to be the protector of so many little creatures. I loved them all, and to be honest hands on heart even the boys got homes. Mike would travel miles to take a cockerel to its new home. The image below is of Mike with his favorite Sid. Sid loved Mike he was a frizzle Poland. Such a character I mean how could you be depressed with him about he made us laugh he would follow Mike around the garden, come in the house and sit with him.

Having the chickens was great therapy for Mike too as he suffered with COPD and the chickens were helping him too. They all loved him. I would often find Mike asleep in the garden surrounded by young birds. They seemed to know he was safe. Mike never got fed up of them he really did love them all.

Mike with one of his favorite boys. Sid.

We even had broody mothers hens that decide they just have to be mothers and would sit for 21 days on eggs even if they were fertile or not. I would never allow that as it wasn’t in their best interests as they would get depleted and it can affect their health.

A broody hen is a force to be reckoned with. Having chickens sure made me realise just how human they really were, as they had traits which were very similar to us when it came to family.

They made great mums, had a huge desire to have offspring, and would protect them to the death. They would always feed their chicks before themselves. In the natural world they would spend hours unearthing tiny grubs, and would give each chick something to eat.

They would teach them how to survive I watched them for hours. Showing them how to bathe (in dirt), and even when the time came they would distance themselves from their brood and let them cope on their own, I even saw a hen show her chicks at 10 weeks to fly from the bench under a tree to the branches to stay safe.

My black Pekin Jet with her babies, headless, showing the chicks how to have a bath.

When you witnessed these things, you were in awe of the experience. Watching them for even a short time, I would forget my illness, would just sit quietly and watch these mothers busy with their chicks.

Below is a frizzle Poland hen, these are not known to go broody but oh dear she had to have chicks. She made her nest very comfortable and had some lovely chicks and was fierce in her protection of them. I knew I had to handle her carefully as a peck off an angry mother is not welcome.

Ewok sat on her nest.

Ewok with her chicks. She successfully hatched them all and kept them well fed and cared for.

It was truly an amazing site and one I shall always remember. I felt privileged to be involved. The hens never attacked me they instinctively knew I was there to help them. All my mothers were well fed and when the chicks arrived I would supply really good quality food for them even scrambled eggs, and the chicks would grow strong and healthy. Too be honest over the years I had broodies I honestly don’t remember ever have a chick die.

One of the best broodies. She was amazing. Looked after these chicks until they were 12 weeks old.

Pippin with her chicks about 10 weeks old here.

Sadly when Mike died I had to make a lot of sacrifices. All my brooding equipment went to a friend, and I had to stop having my chickens. It was the saddest day for me when they all went to a new home. I knew it was the end of an era but I couldn’t cope with them on my own. I did go into depression, not only did I loose the love of my life, I had lost the link that kept me sane and active. Life would never be the same again.

I am now in sheltered accommodation and have my memories, but I believe all my chickens over the years slowed down my progression. Having a reason to get up and care for something was the best decision I ever made. Yes my beautiful garden went from green to desert as they stripped it but spending hours outside with them, was the best medicine I could have had. I do miss them terribly.

I still have my Lucy dog, and I still take her out everyday if its not raining on my scooter. I have my 2 cats but they are more independent and only want me when they see me for food.

If you are reading this with a chronic illness believe me when I say this, having something to care for, get up for is the best medicine ever. I know some will have children, but if you don’t, and your not working if you can find something even a hamster, because the rewards are amazing.

The rewards for me going through all those photographs, watching countless videos of the mums with their chicks still makes me feel good about myself. I know that period in my life was my life saver. And to some extent Mikes too.

My 3 rare vorwerks, brought up as chicks.
Cassy the comedian.
Cassy the mother
Coraline her first brood, showing her babies how to eat.
Beautiful a rare
Pavlovskaya Natalie.

I know my two daughters both had health issues and they have had horses from foals. Their horses have kept them going and active. Even my younger daughter was encouraged to ride to build up her core muscles. Their horses have kept them going without a doubt.

My eldest was bed ridden with M.E. After years of hard work and therapy she could finally ride again. So very proud of her, from totally bedridden for a long time, she worked hard and with the aid of her partner and her beautiful Spirit she started to ride again. To this day she is still riding and has her beloved Spirit. We agreed without him she would never be in the place she is right now, which is as a successful business women running her own cleaning business.

My eldest daughter enjoying a ride out.
My youngest daughter with her beloved Star who came to her at a year old I think.

My youngest daughter sadly also has some bad health issues and the one thing that keeps her going is her love for Art and Crafts, and her beloved Star. Sadly at this time she isn’t well enough to ride, but still tends to her horse to keep her active. Without Star she would probably have been bed ridden.

Star and Mandy several years ago having a giggle.

Animals are amazing. Now they have become a huge part of our lives. They have been guiding people for years who have no sight, dogs were used in the war, as were horses, a lot of disabled people have trained assistant dogs. Dogs are now being used to detect cancer.

Even chickens have a place in therapy. I know of places where they are used for patients with dementia. The chickens give great pleasure to people.

I hope you have enjoyed my blog. Even writing it was therapeutic for me as i remembered so many things that I had done over the last few years, and having chickens enabled me to meet lots of lovely people who I would never have met had I not had them.

This is Ginger. A frazzled frizzle who should never have survived, but she did, and went on to lay eggs and is still alive today. I believe her age must be five now. A frazzled frizzle has been wrongly bred by mixing two frizzle genes male and female. Her feathers would literally twist off and break. At one point she had to wear her coat to protect her back from sunburn. She wore it with pride, and this is her modelling it.

Ginger in her coat.

The first image of Sid as a chick.
Who knew that this little chick would bring such joy in our lives and help my husband Mike with his own illness.

My birds were all FREE RANGE happy birds, who gave a lot of joy to many who met them. They may be chickens, but they have brains, and instincts no difference to us. They have hierarchy, bosses, they trust us, and reward us with love and eggs. I mean how could you resist this cute face.

Ginger and Lucy in the house.
Even Cookie my cat loved our chickens.

When you buy your eggs in future, spare a thought for the hen who laid the egg. She has been denied her rights to have a normal life, of foraging, bathing in dirt, becoming a mother, just so that we may have eggs on toast for breakfast. Only ever buy FREE RANGE.

Remember chickens are for life, not just for eggs.

N.B. Since I wrote this my daughter has painted this.

My daughters painting “Fighting Ur Demons”
This is what my daughter wrote about her painting.

Basically she has shown through her painting how health issues cause you to loose confidence in yourself and your natural abilities and you have to constantly fight the evil warrior who is whispering in your head you CAN’T do this, and the Good Warrior is fighting against the evil warrior and saying yes you can FIGHT this.

She uses her painting to calm herself and cope with her chronic illness and sometimes through her paintings she can express how she actually feels with a very powerful image.

Coping with a progressive and Chronic illness……

Its odd but I find I can cope with my MS, its other people who seem to struggle with it.  My idea really is to just live a normal a life as possible. I don’t want visitors to come and see me and pity me, or keep asking me “how do you feel”? or well you “Look good”!

It depresses the hell out of me. Also if I do say well i am really tired today the stock answer back is “oh yes” I get fatigue too, it comes with age, or my memory is crap you guessed it the same answer back yeh it comes with age, blah blah blah.

Do you eat well?  Try supplements, meditation, go gluten free and dairy free, watch your diet, oh and don’t forget EXERCISE.  we are BOMBARDED with ideas on how to make our journey with this illness easier or even grant us a miracle and cure us, just by buying a book that tells us so. I have bought the books and they all contradict each other. One says eat lagumes the other one says dont eat lagumes. Its never ending.

You should try this diet or that diet, everyone is an expert on how to cope with MS. What people seem to misunderstand is a simple concept.  There are FOUR types of MS.

Clinically Isolated Syndrome (CIS)

Relapsing-remitting MS (RRMS)

Secondary progressive MS (SPMS)

Primary progressive MS (PPMS)

Other, unusual types of MS have been described; these include Devic’s diseaseBalo concentric sclerosisSchilder’s diffuse sclerosis, and Marburg multiple sclerosis. There is debate on whether they are MS variants or different diseases.[63] Multiple sclerosis behaves differently in children, taking more time to reach the progressive stage.[5] Nevertheless, they still reach it at a lower average age than adults usually do

Each MS is dealt with differently. RRMS you can start disease modifying drugs, and have a chance of much less impact on your life if the drugs work for you and you can go into remission for weeks, months and years with very little symptoms.

With PPMS you get this at an older age as a rule. As we know as we get older things wear out  so sometimes you never know whether it is your MS or just your old joints giving you gip or your eyesight or your bladder.

There are no DRUGS for PPMS. No books to read on how to cope with it.  Most famous actors with MS who go around showing how well they are coping with their MS have in actual fact got RRMS.

The books written which are famous for making some of us feel like crap are:

Terry Wahls Protocol (written for RRMS).

Over coming MS. (Written by George Jeinek another sufferer of RRMS)

The Swank diet.

“Ashton Embry’s Best Bet Diet

OMG really all these people have their own ideas on how to cope with MS.  Its so confusing its enough to put anyone in a relapse trying to make sense of it all. Believe me i have read some of them, well skipped through.

I actually try and eat very well and i don’t over eat either.

My way of coping is this.


I think part of a healing process no matter what it is, is ACCEPTANCE. I often liken to having a diagnosis of a disease like MS is we have to go through the grieving process. 

  2. ANGER

I honestly believe we have to accept our illness in order to help us deal with it and yes maybe in some way heal ourselves or help us cope with it better. If it means telling your auto immune to go and do one then so be it. You have accepted the fact that it is this which is controlling your life right now, and your not about to let it rule what you can do.

I suppose what I do is if i get a new symptom is i just accept it. I will say ah so that’s your game is it, today you are giving me an overacted bladder ok well i can deal with that. Not too much of a problem, and i will just pee when i need too and rest a bit more as I know sometimes i get it because i have over done it OR even worn warmer trousers I know silly but it is how i deal with it.

Or a new sensation will come along and i will accept it and say ok so thats your game today, you want to give me this that’s fine i can deal with that one, and i will just ignore it, not make a FUSS about it, and carry on doing things I enjoy like my garden hobby or taking my dog out.

I take only one 2mg diazepam at night for my MS. This is for muscle spasms perhaps which have occurred from poor posture.  It just helps me to settle down if i wake up.  During the day i take nothing. It doesn’t matter how much i am in pain, i accept that the pain is there and I move on.  What can I do about it? Its not REAL is it.  I say to myself I am not ILL I am NEUROLOGICALLY CHALLENGED.  I do listen to a lot of music which i find very calming.

top image is damaged. 

The myelin sheath is damaged which confuses the brain signals. These can be worsened through outside influences like heat for example.

When we are hot the spinal cord constricts, when we are cold it expands, so more signals can get through. So i avoid the heat as much as I can.

Inflammation can be stirred up by certain foods, so knowing which ones can do this its best to AVOID them. Which i do. For example gluten is a real trigger for me for more inflammation response like burning legs.  Like yesterday i just couldn’t resist some pasta and now my legs are really going for it, burning like mad but well it will settle down it always does.

STRESS is the worse thing for MS, so folks no stress please. I just cant deal with it, so everything in my life has to be pretty well organised.

Its LEARNING to live with what is going on and not to poke the bear. I know going out will make me fatigued, fatigue can be dangerous as I loose my balance more and more likely to fall so i do restrict how I go out.

I have accepted my MS its part of who i am. So i live with it i don’t fight against it. I have a decent enough life I suppose. I try my best to keep on my legs as i know to stop using them we loose them very quickly.  I am happy with what I have.

A lot of pain we have in MS in down to musculoskeletal pain, so its important to try as hard as we can to keep those muscles strong to support us.  I do have a scooter and I take my dog out everyday so she and I can have fresh air. It makes me good to feel the fresh air on my face. We use a wheelchair when i am shopping as to try and walk is just PUSHING THE BEAR to much. I have ACCEPTED that I cant do it so why push it.

Diet is defiantly a good way to start I think. I don’t think anyone with MS should smoke or drink to be honest as the smoking is bad enough but drinking alters the brain to some extent and its confused enough as it is and we are more prone to accidents or falls if our brain is so confused it doesn’t understand how to keep us safe.

So yes I do say “oh for gods sake go do one”! I cant be bothered with this rubbish (I use a stronger word here lol) right now. And after a while of switching it off in my mind i forget its there.

Like i said i take no drugs during the day. When the pain of wrong turn signals gets too bad I have a bit of therapy in the form of shopping lol. I have way too many things in my little flat lol. But it does work.

I also write a blog which helps me to concentrate on something else then what is going on with my body and I watch lots of things on amazon or netflix.

I know i have been told i have a progressive disease, i have to learn to live with it, no point in crying over it, there are worse things out there to cope with and people far worse then I am.  I think as humans we are challenged and its whether or not we ACCEPT that challenge or deny it that is the key.

All I need it my life is less stress, I have a loving family and friends, and when people do come and visit me, I just want to talk about NORMAL things, i dont want to be reminded constantly all the time, that i have a progressive disease, it depresses the hell out of me.

It all helps make this journey a lot easier to cope with if you just see me for who I am and if you really know me you will realise I am not about to let some disease invade my body and tell me what to do with my life, STRONGER MEN HAVE TRIED and not succeeded.

Something which is known just by capital letters is hardly ever going to be a challenge for me as i can change them. MS can stand for anything if you have imagination I call it  (Monster Sucker). It doesn’t have to stand for The End of your life, just the start of a different life with new challenges.


I just wanted to share with you how I cope with my progressive disease everyone is different and has their own ideas but its my personal journey and so far it works for me.smiley






Beware the hand of friendship from a two faced person….

Well I am here, since 3 weeks now in my new flat.  Its all mine small but perfect.  I have settled in very well.   Disaster did strike though as I managed to pick up a virus from someone and for 2 weeks have felt like rubbish, so kept to the confines of my flat as I don’t want to meet vulnerable people and pass it on.

When i first got here, I drove round the back of the building to my rear patio area in my scooter and parked it right by the side of my flat as I am the last flat I have a lot of space, and all around the edge was a suitable hard-standing which was perfect to park my scooter on although there was a large bush in the way I still had room to park.

Before we had even got into my flat I was accosted by 2 er ladies, who introduced themselves and proceeded to tell me all about all the people who lived there and I was warned of gossips (well that was a laugh coming from them), and also warning me of this particular guy and his wife who thought they owned the place and woe betide if you crossed them.  Well that little gem went down well.  One thing I cant abide is gossiping I prefer the company of men as from my first job I worked in an all male environment.

Still I listened intently made the right noises in the right places and finally managed to get into the flat.

The second day I decided to go over to the park with my dog Lucy the meeting the day before gone from my mind. This was our routine most days as where I had lived the outside was the same, living right by a park.

I had a large area of paving i could drive on first then i kept to the very edge where the hedge was and on a thick carpet of leaves, because above that was a very dangerous slope and i am not that stupid I would use that to drive on.

I know Mike and I did production car trailing, but I wasn’t about to try it.  Besides which i was mindful of driving over grass. So we did the full circumferences mostly on the flat, and I had to only drive a small area on flat grass to the front of the building then find the little path down to the park.

So from the back I drove past the side of the building (back and front flats), to the front to small path which took me to the park.

route to front

I quite enjoyed my drive out it was lovely and fresh, and whilst there I watched several trains go by. Not sure why trains make me feel so exhilarated, sure there is an answer to that one……in the deep recesses of my brain…. but it was a passion both Mike and I enjoyed so i find them quite comforting I suppose.

On my way back I drove the same route, and the guy who lived in the end flat came out and walked over to me and started to chat. He seemed friendly enough was ex Army (same as me) and it turned out he had also been stationed in Munster Germany when I was there 1970.

He was living in Hazelwood with his wife who was poorly.  I had the impression he was a bit of a KNOW IT ALL. He obviously hadn’t relinquished his clip board from the Army and once I got to know him, my care worker nick named him Colonel Clipboard.

The next day we had the same routine, but this time he came out on the way out.  I had a certain chill down my back as I felt he was there to cause me problems.  Skirting around the subject he said WE (the royal We not sure who the other people were), are worried for your safety driving slopes as you might have an accident.

Now really what slope? I assured him i had been driving my scooter on grass and bumps and dips for many years with no issues so you don’t have to worry…….and spent a few minutes exchanging pleasantries…

Then I had the visit from the Warden who looked after Hazelwood that day. Her pretence was to introduce herself, and immediately started to talk to me about using my scooter out the back and safety concerns.

I explained to her that on sign up for my flat the lady dealing with housing had clearly said I could have an outside power point to charge my scooter and they would more then likely put me a small hard standing.  At the front of the building there was an area where you could charge scooters but only 4 points which were being hogged every day so you had no chance of getting your scooter charged. So I was quite happy with my arrangement and I told her that.

She went off, my next visit was the groundsman manager who had just started at Hazelwood.

Gosh I was getting a lot of attention, we went through the same thing, he said he would check with the main Manager of the areas sheltered accommodation over it and see what could be done. The picture below it looks like the ground is on a level joining the slabbed area, it isn’t its actually quite a big slope downwards (area marked red).  It extends quite far. My route is by the side of my flat across the area marked blue so totally safe and flat.

my route

Well upshot of it was the boss wanted to visit me and work out what could be done as it simply wasn’t safe for me to park and drive and against Health & Safety regulations. SIGH really what a load of crock. But still what could I do. I used to write H&S and I knew I was not contravening any H&S issues.

If anything they were. Steps away from my hard standing area is a nasty slope and it wouldn’t take much to actually slip  over and down it.  (No safety rail tut tut).

Also what was the point of supplying hand rails and an area to drive a wheelchair onto too if you couldn’t get to it?

The mangers name was Linda and well I knew her. Mike and I knew her years back as her parents lived near us, and her father kept the best garden in the area it was beautiful. She knew Mike  quite well and we chatted about him (she took time to do that as she was very busy).  It was a COMPLAINT they had received about me driving dangerous on the slopes and some of the residents were worried for my safety……

I must admit I laughed and said to her jeez did you ever see Mike and I in our old Skoda doing production car trailing ….. ? (Below in our Skoda going up a very bad hill on one of he hardest courses make your hair curl. We used to have to drive up the Nailsworth Ladder what fun, so driving my scooter on a tiny slope was a piece of cake!


(This video shows you what Mike and I used to get up too. great fun.

I said it is very kind people are worried about me, but I am never going to act irrationally or dangerously not when I have my dog with me anyway. I took her outside and the manager (groundsman), and showed them where the scooter was parked, and my exact route.

Well she burst out laughing, and said she had been told i was going up and down dangerous slopes to get out.  I said well where are the tyre marks?  Clearly there none. Realisation dawned on her face and she smiled and said to the manager. Get that bush removed and put a requisition in for an outside power point.   We will see if there is another way Zenda can access the park (ideally a gate straight from my flat). So the bush is being removed today weather permitting, so i have a large area to drive onto and I can park outside my kitchen window, and they can spur off an outside power point there.

They were even talking about putting in a concrete path around the side for me to drive on.

She was relieved and said so. I am so sorry she said we have to act on complaints and we were told you were endangering your life. Not only that you had workmen in to build you a hard standing……… you couldn’t make it up could you.  I said that hard standing was there when i moved in.  I said I know who spoke to you, I had a feeling he would.  He is just a busy body with nothing better to do, he probably just doesn’t like me going past his flat. She actually nodding acquiescence to that, so i knew i wasn’t far off the truth.

So its all systems go. I might end up with a gate straight out to the park. However, as I am not contravening any Health & Safety issues I can continue my route. They will make sure i have an outside point as soon as possible.   So my flat will now have its own scooter point which is ace and who knows I may end up with my own private exit to the park what a hoot.

I cant wait to see that guys face when he sees the big bush being taken out, and hears about my electric point being fitted, I am one of the privileged few. Its true what that say, its not what you know its WHO YOU KNOW that counts, as her attitude changed completely when she saw me.

For his own reasons this guy wanted to make it difficult for me, I do think it was a privacy issue or even a control issue shame, he needs to put his clipboard away and get a life and not interfere with mine.

You can only feel sorry for people like that really.

When Linda left we were laughing and joking, and she said how lovely I had my flat and wished me well.  I knew then i had made a new friend who had been lost over the years.

Its a good idea to have friends in high places……………..

(Since I wrote this the bush has gone. I have been approached by several residents who are putting in a complaint about this guy. They came to tell me they support me.  Not only that I have found out that a couple actually DRIVE their scooters inside the complex and park outside their upstairs flat in a recess area) yet I was told I couldn’t bring mine inside and charge it and store it under the stairwell).

I think this place might turn interesting after all…………….watch this space.