Toilet Training & P B


Small steps”... I think  that ‘s what is it they say.. when you’re training a toddler to use the toilet.

Toilet Training & P B. Well – After spending a full half an hour with the my Tens machine, firmly attached to my left thigh; I went for my afternoon constitutional … Quite a pleasant trip really, not too much dust around the place and only about 25 steps, so quite achievable really.  Anyway “like a child on an Easter egg hunt” I was rewarded for my efforts; not with a chocolate egg , but another mile stone conquered, I have achieved my PB “personal best”…

I  have finally managed to figure out how to access the cloakroom, without fighting with my Rollator… My new mechanical companion and I are starting to move as one and heading towards “perfect harmony”. 

image1 2

We (the rollator and i)  turned round together, then I proceeded to pull my pants down and my skirt up (which is no mean feat) that’s why I mentioned it… there is no mechanical device that i know of that can actually do that for me.  Then the next step was to manoeuvre myself into a position that would result in locating my derrière into a comfortable spot on the loo. This exercise was not so successfully executed because I landed with a  bit of a thud… Not at all lady-like and not at all comfortable.

Must add (derrière placement practice) to my list of things to do.

Any way i am pleased to report that i managed to do a wee,  got up and washed my hands and made it safely out of the door without further incident. How  funny it is that little things like this are such achievements to me now, and OMG i am actually writing about it in this blog. Oh well hopefully it will give someone a laugh!


I came out of the cloakroom so excited and threw myself straight to my husbands arms, saying “kiss for the girl who is now potty trained”.  Another hurdle crossed. Next step is to try to do it regularly then I can get this Catheter removed. This process is called in medical terms  (TWOC) trial with out Catheter! It has to be authorised by the doctor; God only knows why,  but it makes me feel very important, knowing that i need authorisation from a medical professional before i can pee on my own.

Training continues

I Found a wall… there are quite a few in my world at the moment. But i need a wall that is clear enough so that I can stand with my back against it to try to push my bum and shoulders against it so that i can stand up straight. The only problem is that my heals raise off the floor… not really sure how or why that happens but will  ask my Physio next time.

At the moment my bum sticks out when I walk which is not a pretty sight!  I do need to sort that one out. Hubby and I are getting on much better and I have tried to make light of everything and by doing so have managed to snatch a few kisses and cuddles, each time I achieve a goal I celebrate with asking for a kiss, which so far is working out quite well.

Today’s tasks:…

  • Get up and walking to and from the kitchen three times.
  • On the way passed the cloakroom try using the toilet.
  • Place Tens machine on my left thigh for half an hour.
  • Do exercises by pulling up my left leg with my leg strap.
  • Paint nails and toes nails.
  • Moisturise any exposed skin, or any skin that I can get too.

That should keep me busy.

District nurse turn up unexpectedly,she came to change my Catheter, but as I explained a nurse changed it a couple of weeks ago, on an SOS mission because the last one had fallen out.  it turns out that she had written the details in my home folder but obviously didn’t update my records in the office. Anyway it wasn’t such a wasted trip after all because  I told her that I was taking Amoxicillin for a UTI bladder infection and for that very reason my catheter should be changed due to the risk of further infection.

Unfortunately I didn’t have a spare as it was used last time. I have replacements on order but as yet i have not received them. She called the supplier who said they had received my order request but, where still waiting for the doctors to sign the prescription. How bloody ridiculous… the nurse told me that 6 months ago they didn’t have to go though waiting for perceptions to be signed for, it was done automatically. Anyway  she has asked them to try to speed it up because it is urgently needed now. She booked in to see me next Friday and asked that if I hadn’t received the supply’s by Tuesday to chase them.

I do hope you enjoyed my attempt at a little lighthearted Toilet Humour… See you soon.


Toilet Training & P B

Finally it’s official…I have a screw loose

 Just a short blog to update you all on my current status…

Finally it’s official…I have a screw loose.I have just received a copy of a letter from the Fracture Consultant; original sent to my Doctor.  He has officially declared that I do have a screw loose, and signed me off of his books.


OMG – I have nowhere to hide now… Many people who have known me in the past would say that I have always had “A SCREW  LOOSE”.

To all of you people who have been so rude to me in the past…I dedicate this image to you. The screw was not  in my head, Silly… it was in my leg!


The doctor has agreed not to take out the screw from my ankle because he does not believe that removing it would give me any more movement than I already have, and there probably would be no benefit from a further operation to remove it.  It has taken me 6 months to get to this point in my recovery, but the sad reality is that he puts the length of  my  recovery down to my MS.

Oh…  he also said the screw has moved 3mm so told me to keep an eye on it. So I have to look to see each morning if I leave a screw in my bed, or when walking make sure nothing is left behind me.

NOTE TO SELF: Get hubby to buy me a utility belt so that I can hang all the new gadgets I need around my waist.



Look on the bright side… at least I don’t have to have another operation!  Until next time, KEEP SMILING…





THE STAIR LIFT SAGA.We had a guy from the council come over to let us know that they had approved our funding, but they need two quotes before they could give us the final go ahead.  They sent out another guy who confirmed that they could fit a lift to our stairs … there were two different types, one that went on a straight stair case;  that is suitable for up to 25 stone in weight. And the other option that we needed, was  a curved lift but that one can only carry up to 18 stone…  As you can imagine my spirits are at an all time low already and i did not need anymore bad news. I am  just over that weight limit so they won’t fit one.



I became very withdrawn and depressed as you can imagine. I have been battling with my weight for years, I’m on Levothyroxine tablets for  an under active thyroid, and since leaving work and also breaking my leg i have not been able to move around very much at all. This is a very good reason why i have put on loads of weight… but how else am i suppose to stay active? People assume when you’re over weight you must stuff yourself with chocolates, crisps and biscuits all day, but I certainly don’t do that!

I’m 6 foot 1 inch and people say “You don’t look fat and you carry it well” Thanks for all those great comments BUT! … the only way I can loss weight is to eat less or tape my mouth shut.

I am now on a carbohydrates free diet and  so far I have lost 8 lbs in just 4 weeks so I will get there eventually.



Anyway!  Back to the chair lift saga… After that disappointment about the stair lift we contacted another company, a guy that helped us with another piece of equipment, a scooter that breaks into 5 pieces to go in the boot of the car, rather that those huge things that need a special van or adapted people carrier for.  This guy came out and measured the stairs and said it could be done and  he would get back to his office and call the manufactures to check which would be suitable then email the two options with quotes to the council.

Finally a phone call from the council… They had received the quotes, but  would not accept the straight lift. That one would mean I have to get up the first two steps before i could  get on the lift. However they would accept the other lift option because it has a 19.5 stone 125 kilos limit which is suitable for me. So keep your fingers crossed.

If all else fails my darling husband said he would get a block and tackle … ha! ha!

literally LOCKED IN

Feeling Lonely and desperate – Literally locked in!


I have always tried to stay positive, but some things just get the better on me and I fail… I am a mere human after all!

 Literally LOCKED IN.Negative feelings are a bit like weeds in a garden bed, they have a sneaky way of taking root, and before you know it your mood has changed and those feelings of loneliness and desperation have taken over your positivity. I am sure everyone has good and bad days but our individual ability to cope and get through the negative time, has a lot to do with our own personal support network. Having the mental strength to sustain a positive attitude is hard sometimes…

I am definitely not a psychologist but I have read many articles about staying positive and they all point in the same direction: Self talk and trying to fill your head with good thoughts, helps to keep the negative stuff at bay. It’s a little like regularly pulling out those intruding thoughts, in an effort to maintaining a weed free head…

Didn’t someone say “loneliness is the saddest word”, well it is! I miss not having someone special to speak too. I love my husband and when we first met we talked about anything and everything, but now we don’t talk about much at all. After 25 years of marriage I think we have both forgotten what drew us together in the beginning. Many people just go through life day-to-day but forget to take care of the important things that make us all happy… we are sometimes so wrapped up with the daily routine that we forget to nurture our relationships and before we know it the kids have grown up and moved out and there we are staring at our partner trying to find our way back to the love affair that started the whole thing off. You only have to look at couples eating out together in silence, I wonder how long they have been together, others in a new relationship don’t stop talking.

I know that sounds strange and I’m sure a lot of married people say that life seems to go from one thing to another children, work and family etc but when those things have either finished or children that have left home to start their own lives there’s an emptiness that is so hard to fill.

Unfortunately as far as friends are concerned I don’t have any!              I know that might sound strange to those of you that have many, but most of this is my own fault… Fifteen odd years ago I had a close group of three girlfriends, our husbands and kids all got on well and we shared some great times together… but something changed and without going into details I had a falling out, “big time” with one of the three girls. It became so bad that if my family or I were invited to an occasion, the lost friend would not go! so to stop the others feeling uncomfortable I decided to drop out to make things easier for her, sadly the other friends just carried on as if I no longer existed, and my group of special girlfriends simply vanished.

I did have another good friend and we shared lots of great times together. Our husbands got on well and we would go away in our caravans and went abroad on holidays together. Unfortunately  she died of cancer four years ago, bless her. (Can’t believe it’s that long ago). Anyway, her husband remarried and moved away so that was the end of another very special friendship.

I did have other people from work but I wouldn’t call them friends, more work colleagues, but I lost contact with them when I “Retired due to ill-health”. So there you have it in a nutshell I don’t speak to anyone from one month the next …apart from speaking on the phone to my mum once or twice a month, I do speak to my sister ever so often, but we are emailing each other more often since Dad passed away. He would have been so happy to know that we have managed somehow to settle our differences.  My sister and I fell out some years ago, over something really silly and we didn’t talk to each other for several years. I know I just sound sorry for myself but I do miss my husband, especially now as I’m stuck down stairs in the cold conservatory in a hospital bed.  When he helps me to bed at night that’s it…there I am alone with no body to hold me or cuddle up to at night, I feel so sad and alone some nights.

That brings me to the part where I need to talk about my husband… I know that MS does not just affect the sufferer; it actually affects the whole family. I had been running the house before my M.S. was diagnosed, I had a full-time job and did the cleaning, washing cooking and shopping when I got home at night or at the weekends (general everyday stuff that all of us do on a daily basis). I can’t do allot… and now that I have added to the MS symptoms with my broken leg and shattered ankle I’m a bit useless! So my husband has had to take on everything from cooking, cleaning, washing, shopping and also waiting on me hand and foot, washing me dressing me transporting me to doctors, hospital and Physio appointments, He is basically my full-time carer and as you can imagine he is pretty exhausted.

I miss him and I miss the relationship that we used to have…I need him to love me like he use too, I need him to hold me, and laugh with me and talk to me like before. “This was not in the brochure”! This was not my dream for our future! He was not meant to be my nurse… We were going to grow old and enjoy our life together. I never wanted to become a burden to him, I never wanted this, and I could never in a  million years have imagined how things have turned out. It does sound a little desperate, I know and I am sure there are many other people out there that think the same thing about their illness.

To suddenly become disabled in your 50’s, or any age for that matter, Is a big shock to the system.  To lose your Independence your dignity and your mobility makes you feel completely useless. I do the same thing day in a day out, to the point were I forget the days of the week sometimes. I can’t even get out  because we live in the country side with nothing around us and you need a car to go anywhere. I use to drive all over the place but now I can’t even get out of the house on my own let alone get into a car and drive somewhere.

I am literally locked in and staring at these four walls…


Physiotherapist & Health Visitor (equipment at home)

Physiotherapist & Health Visitor (equipment at home)

Hi there I’m back again and do hope that someone is out there reading this…

Physiotherapist & Health Visitor (equipment at home). A visit was arranged for an OT (Occupational Therapist) to visit me at home to assess my needs, a week or so later a guy arrived with two raised toilet seats, one for the downstairs clock room the other for our on suite, he also put up a grab rails for the clock room, a pull down rail to help me get off the toilet upstairs, a grab rail on the wall next to our bed to help me get up during the night and in the mornings, one of the most useful things was a preaching stool in the kitchen, So I was sorted(or so I thought). That was towards the end of 2012.

Christmas 2012 was the last time I had a drink, what happened was a real scream, one of the situations you have to laugh or I would just sit and cry. I have Christmas lunch in the oven and my husband and son took me down to the local pub for a quick drink, while the turkey was cooking. I only had one glass of wine for two reasons really, firstly I still had to finish and serve the lunch and second big reason alcohol doesn’t really mix well with all the tablets. Anyway we enjoyed lunch and I have a second glass of wine, which was a big mistake… I was sitting watching TV as you do on Christmas afternoon and decided to go upstairs to get something… But and my leg just didn’t seem to connect with the ground and I just lost my footing. Luckily I was not actually on the stairs but no matter how hard I tried even with the help of my husband and son I just could not get up.

They decided to try and get me upstairs and put me to bed because it was getting late. So with my son up the steps and husband at the bottom step off we went one step at a time, but each time I got up one step up, somehow I managed to slide down one step so as you can imagine it took forever.

When I finally reached the top stair another problem arose… how was I going to get from the top of the stairs to the bedroom? The only way was for my husband to pull me from one end and our son to push me relying on the fact that I was lying down and my clothes would act as a smooth surface, my two gallant boys managed to tow me to the bedroom and some how they got me in to bed. We were all laughing so much that we had tears running down our faces, so what started out as a problem actually turned out to be one hell of a funny experience. After all the frivolity I was totally exhausted and slept like a baby that night.

2013 so far so good carried on working, but things would happen this year that I could never have expected. Without going into to much detail I had to “Retire from work due to ill health” that was in October of 2013, well at least my stress level reduced once I stopped work, I could now attend Physio and hospital appointments during the day without booking time off (don’t ask) anyway my husband who had been made redundant a few years earlier became my full time carer, unfortunately my MS advanced at a rate now,my mobility was deteriorating rapidly, I could no longer walk just using my lovely walking sticks .At one Physio appointment the inevitable happened I was given a walking frame (Refused to call it a Zimmer frame) I’m only 53 so felt I wasn’t old enough to have one of these, but it was just for home. We decided to go away for a weekend so called the wheelchair services in our area and arrange an appointment to be assessed, hopefully in time to get a wheelchair before we needed it to go away. Well they were brilliant explained that we planed to go away to the Norfolk Broads for a weekend and they delivered a brand new wheelchair suitable for me in a fortnight.

We were off weekend book at a B&B with disabled access (yes I now have to refer to myself as disabled) It was great to get away we spent days going around the broads lunch at quaint pubs ,we sat out side in the great weather over looking the water, we just looked where the disabled toilets were. Had a great weekend.


My leg was actually broken.

My leg was actually broken.

Day by day, Funny and Sad moments.2014 was not a good year in general, my dear Farther died in June after never being ill a day in his life. More about Dad later but for now I will continue on with my story…

In September I fell over in the front room, I didn’t fall over anything really I just collapsed in a heap on the floor, but I knew straight away that I had done some damage. My husband helped me to my chair (a Raise and Recline chair another piece of equipment from my OT) I was In such a lot of pain and unable to get out to the car to travel to the doctors so I called them to see what they suggested, they said they would call an Ambulance as I would probably need an x-Ray so the call was made and a Saint John Ambulance with two lovely paramedics turned up within half an hour. What a fiasco! It wasn’t until I became disabled and needed to use a wheelchair that we found out our doors; especially the front door was narrower than most standard doors.

The poor ambulance people basically had to man handle (or woman handle) me out of the door on a special chair; the pain was so bad that I was on giggle gas. We eventually got in the Ambulance and was taken to Accident & Emergency at the local hospital, it was a very long day but 5 hours and several x-Rays later I was sent home with a long tube grip bandage on my leg and told it was just a bad sprain. My husband had followed the Ambulance to the hospital wheeled me back to the car and we drove back home.

That was on Friday, all weekend the pain was pretty intense, I just knew it was more than a sprain then the following week I received a call from a doctor in A&E at the hospital asking me to come back in because they had looked at my x-Rays again and found I had actually broken my leg. It was so obvious even to the untrained eye that it was clearly more than just a sprain, so off we went to see the doctor who took a better look at my x-Rays.

They sent me to the plaster department were they plastered my leg from my thigh to my toes… and an appointment was made for me to attend the fracture clinic the next day. I couldn’t get into the car with a plastered leg so we went back into the A&E department and asked if transport could be arranged, luckily they had a medical estate car with a driver and nurse available to take me home; the car was kitted out as a first responses vehicle with a stretcher that came out and legs dropped down to allow it to be taken in and out of the car,so off we went back home.

My husband was already there when we arrived but as they pulled me out of the car the trolley legs collapse while I was still lying flat on it… I hit the ground with such a big thud that it left a plaster marks on the paving bricks on our drive as well as a fair few bruises on me. They were of cause very apologetic and the drive tried discreetly to call his base and let them know that there vehicle would be out of service due to the stretcher breaking. Anyway my husband got a chair out of the house also the Elk (an Inflatable Emergency Lifting Cushion, also from the OT) to get me to my feet so they could transfer me to the chair as well as a blanket as it was 6pm and getting chilly, while the driver had to return to the hospital to retrieve my wheelchair, once he returned I was taken in and placed on my chair. As you can imagine they refused to collect me to take me back to the hospital the next day for my appointment, we had to pay for a special taxi that had a ramp to take me in my chair.

When we eventually saw the consultant again he was very rude and the first thing he said to me was “you know the reason why you have broken your leg so badly is because your FAT” (yes I have put on weight since leaving work, but I’m trying very hard to lose weight, it doesn’t help being in a wheelchair with MS) anyway I said just as sarcastically thank you for telling me that I didn’t know. He told me I would have to be admitted to hospital and undergo an operation in the morning as I had not only broken my leg but had broken bones in my ankle which needed pinning.

Shock horror I had been walking admittedly badly with my walking frame for a week before anyone realised it was broken, so what extra damage had I done? I was admitted straight away (sent husband home to pick up my overnight bag I had already packed months ago just in case) my husband also bought in all my MS medicine which I was allowed to administer myself, I was also fitted with a catheter as I would never have got a nurse to get me a bed pan before I wet the bed. They said they would probably have fitted one after the op the following day anyway,it was one less thing I needed to worry about. The following morning I was wheeled down to the operating theatre, where they operated on my leg and arrived back on the ward with another plaster cast.

I spent 10 days in hospital when I should have only been there two days, the reason being that the OT’s from the hospital had to check my home was safe and suitable; which of cause as it had stairs to the bedroom was not, now you can see why there are bed blockers it’s because each person has to go though the same as me, in my case a hospital bed with air mattress had to be delivered to my house and the only place they could install was in our conservatory. I was kitted out with a mobile commode, and nightstand and a few days supply of catheter night bags, these were given to me on leaving the hospital. A district nurse came to visit the day after I arrived home just to check on me and start a home file to be added to as and when required.

6 months later I’m still there, washing in a small hand basin in the clock room with my husband helping me get in and out of bed wheeling me into the clock room to wash then wheels me into the front room curtains closed to help me dress with the cloths he brings me down from our bedroom.




Entitlements and benefits

Entitlements and benefits.

This blog contains a little information about benefits & entitlements in the UK . I hope you find it useful-

I first looked online at to see what I might be entitled too, and found to my relief there was quite a lot…On top of the PIP (Personal Independent Payment) that I had applied for and received while working, I could apply for other benefits.

First I completed the calculator on line that lets you see what you are entitled too, there are a lot of questions and information needed to complete the form, but once done i simply pressed the button to get another form posted back to me for my signature.

We had to attend an interview with the Job centre just to confirm the information was correct, then I had to post medical certificates out to the DWP every 3 months for about a year until I was finally put on a different banding; which changed my status from unemployed because of sickness to unemployed due to a disability.

This new banding meant a few things, I no longer had to supply medical/ doctors notes and was able to get my prescriptions free. This  was a GodSend! Fortunately the year before I had purchased an annual NHS prescription card which cost about £120 but was so worth it because having MS does not mean you get free prescriptions. My medications would have cost me a fortune, at the time each one cost £7.50 a pop and considering I was on 12-15 single percriptions a month you can do the maths.

Entitlements and benefits


My newly acquired MS bladder did not come with a control valve.

My newly acquired MS bladder did not come with a control valve.

No control Bladder copy

My newly acquired MS bladder did not come with a control valve.It was July 2013 I was still working, driving and using a walking stick, couldn’t wear my lovely high heals as I would wobble and look as though I was pissed. So the only way to add a bit of individuality was to match my outfits with different coloured sticks and scarves…

I received a letter from my local hospital and was made an appointment to visit an MS nurse, she I must say has been a Godsend, she talked me though want my needs were, and what was available to me medically.

One of my symptoms was bladder urgency (when I needed to go; I had to go then and there! But my newly acquired MS bladder did not come with a control valve). Needless to say I had many embarrassing accidents, which resulted in my decision to start using incontinent pads. My new undergarment accessories were initially fairly small, but my missing bladder control valve eventually led to me having to use the nighttime pad size, which I bought in bulk on line.

I started on a course of medication for my bladder urgency, as well as pain relief but each tablet had certain side effect but I had to weigh up the benefits against those side effects. Well! 18months later and many changes to my medication we seem to had got it right, at long last I’m out of pain, how long for not sure but will enjoy it while I can. It was also suggested that I take some extra vitamins such as Evening Primrose oil, Fish Oil, vitamin D, zinc and Vitamin B12, which I take. Some of the side effects of the other medication include constipation, weight gain and oedema (Swelling of my knees) to name a few.

My MS team also held a course one night each week for 5 weeks that was for sufferers and careers, which was very informative. But after that I was on my own, I being the person I am was not ready to sit back and carry on without knowing what was out there so off I went iPad in hand.

I first joined the MS society and the on line Forma that I found was very useful, but I still didn’t find the answers to my questions. I made a list of all that was out there available and posted that list on the Forma, I got a lot of thanks as some people were not aware of some things out there for instance list below.

  • Radar Key (opens every disabled toilet in the UK)
  • Radar Card (show to shop keepers if you need to use the staff toilets urgently, explains you have MS
  • Blue Badge (get from your council)
  • PIP (personal independent payment)..
  • Access to Work (call your local DWP office)

My newly acquired MS bladder did not come with a control valve.



14 Months of Testing

Hi there!  hope your still with me.

I will carry on with my story… Let’s get back to 14 months of testing before a final diagnoses.  I was told the reason it takes so long to get a final diagnosis is because the specialists need to rule out all other possible causes.

I suppose they have got a point… my consultant said that testing has come a long way in recent years, however some people that were told 10-20 years ago that they had MS; only to be retested and then told that they actually didn’t have MS at all but something else. So as you can imagine a huge legal battle started.

Anyway I had blood tests after blood tests, electrical brain simulation and eye reflect tests; where I was linked up to a computer, MRI scans with colour dye injected to check for legions (these tests found 3 legions in my brain!) I think the worst test was the spinal tap which is also know as a lumber puncher, they had to do that 4 times because they couldn’t get the massive needle past my back bone. They decided to try again under X-ray; all this whilst I was awake and it hurt like crazy.

Oh yes I was going to tell you about another story that relates to how I was misdiagnosed many years ago. I was at work one day and all of a sudden I lost the peripheral vision in my right eye. It was quite a scary feeling because I could only see things that were directly in front of me, but I could not see anything at the sides. That sounds a little crazy but we often take for granted simple things and don’t actually realise how amazing the human body is until suddenly part of the mechanism fails. I went to the optician that same morning and she made an urgent appointment for me to visit a specialist eye hospital in London the next day. I spent another full day of testing and the next day was sent to my local hospital for yet another MRI scan. The consultant called me in to deliver the mind-blowing news… I had a brain tumor on my Pituitary Gland (this was later explain as lesions on my brain) He continued by saying “but that’s ok because he would be able to take the tumor out though my nose, so no major brain surgery”! I would be in hospital for a week but have to take 6 weeks off work.

The consultant called me in to have another MRI just to confirm the size, but surprise! Surprise the tumour had gone! But the effect were felt for some 5 years I couldn’t get life insurance  as there was no explanation as to where the brain tumour had gone. I was very confused and upset and received no apology from the consultant who had given me a completely inaccurate diagnosis… My life was turned upside-down from that day on. I had made the mistake of telling my family that the hospital thought that I had a brain tumour; but now I had to call back and tell them all that I did not have one at all.

I felt very stupid to have upset everyone about the diagnosis and felt like my family and work colleagues now thought I was a complete fraud. I decide from that day on to “suffer in silence” and not tell anyone anything and sadly that was when the communication between my family and I started to deteriorate, I was desperate for some comfort and support but felt that I could not tell them what I was going through until I got the facts right. I suppose I started to withdraw into myself, which made talking on the phone quite difficult especially as we were all so many miles apart.


My life carried on and I still had no answers to my questions… why was I always so tried even after getting 8-10 hours sleep a night? Every Saturday and Sunday I had to sleep for a couple of hours in the afternoon and if I ever had a day off work I slept most of the day. Even when we went on holiday I had to take a nap after a full day out-and-about just to recharge myself so that I could go out at night.

Another misdiagnoses meant I had an operation to repair a slipped disc in my back. Whether I had a slipped disc or not, I will never know but that also didn’t solve the problem. After again visiting the doctor with more symptoms he finialy sent me to a consultant Neurologist where I started the 14 months of testing, that brings me back to the start of this session.

More to come hope to see you then.


What does M.S. really stand for

What does M.S. really stand for

  • Multiple Sclerosis?
  • Major Seclusion
  • Many Situations?
  • My Story? …

My Story begins…Hello and welcome to my blog. This is my first attempt at blogging so please excuse me if I don’t follow the normal structure.

I wanted to start this blog because I was recently diagnosed with secondary progressive Multiple SclerosisMaybe I’ve been looking in the wrong places, but all I can find is medical advice; even when I looked on the MS Society site I could not find anything from the personal prospective of someone with the disease. I dearly wanted some information about how to cope on a day-to-day basis. So for that very reason I decided to start my very own blog so that I could share my stories and information with others in a similar situation in the hope that it may help.

Here is the science bit: taken from the MS Multiple Sclerosis Society web site.

What is Multiple sclerosis?

Multiple sclerosis (MS) is an autoimmune disease in which the body’s immune system attacks its own central nervous system (CNS), which is made up of the brain and spinal cord. With MS, the immune system attacks and damages or destroys the myelin, a substance that surrounds and insulates the nerves, causing a distortion or interruption in nerve impulses traveling to and from the brain. This results in a wide variety of symptoms.

Multiple sclerosis (MS) is a neurological condition which affects around 100,000 people in the UK. Most people are diagnosed between the ages of 20-40, but it can affect younger and older people too. Roughly three times as many women have MS as men.

There are basically three types of MS.

Relapsing Remitting MS (RRMS): In relapsing remitting MS, people have distinct attacks of symptoms, which then fade away either partially or completely. Around 85 per cent of people with MS are diagnosed with this type.

Secondary progressive MS (SPMS): is a stage of MS, which comes after relapsing remitting MS in many cases. Neurologists generally agree secondary progressive MS is a “sustained build up of disability, independent of any relapses”.

Primary progressive MS (PPMS): has this name because from the first (primary) symptoms it is progressive. Symptoms gradually get worse over time, rather than appearing as sudden attacks (relapse)

I have SPMS which means I have been suffering for many years and didn’t know it, but since my diagnoses it has become obvious that systems where there for years but we didn’t know. Anyway more on that to follow…

I have used the name Amazon lady because this was the name given to me many years ago, when a Doctor referred me to one of his colleagues with a letter “which I had to open’…The referral letter started like this – “Dear John I am sending you this Amazon of a Lady, and would appreciate your feedback”…  So to this day I refer to myself as Amazon Lady.

I thought that I should write a little about myself so that you have a picture in your mind of who I was before my diagnosis…  I was a loud proud 6.1-foot “Amazon- lady” with an eye for colour and a sense of style. I took great pride in my appearance, always wore makeup had my hair cut and styled regularly, I had to look my best at all times. I had beautiful clothes and shoes with matching handbags and tried to find a scarf to compliment my outfit “only if required”.  (My sister used to say that I was the only person she knew that could just throw a scarf around her neck and look like a movie star. I don’t know about the movie star thing but it was nice to think people thought of me as stylish). I had a good job a loving Husband, a Son and a beautiful home; admittedly mortgage to the hilt, but we managed like most people. We had a couple of weekends away every year and visited many different city’s in the world; we also had a large caravan that was knitted out with all the mod cons and we traveled all over the country in our second home on wheels. Things were not perfect; but life was good! And I was considered to be successful.

Then the day came when I was given the diagnoses.

Many times people have asked me how I felt and all I can say is… “my whole world came crushing down”. What the hell was going to happen to me?  I left that consultants office in a complete trance, the world was just rushing passed me and it felt like I was watching my life though the window of a fast moving train heading straight towards a tunnel without an end, the light was rapidly going out and I had no control over any of it, my life as I had know it felt as though it had ended.

I know that sounds really dramatic but that’s how I felt. I have never really spoken about these things before because I never really had anyone to talk to about it, and you just carry on until the time comes when like now when someone or something prompts you to get it out. I have found great comfort in putting this all down in writing, if it helps just one person going though this then I’m glad.

Getting back to my diagnoses, which incidentally took 14 months of tests to finally find out what i think I already knew. ” I had M.S.  When the consultant said, “I’m sorry to tell you but I can know confirm you have secondly progressive MS” my husband and I sat in silence for a few minutes and then I said, “ok thank you! But can we go back a few steps because I don’t really want MS”.

At first it was the biggest shock although as I have already said… I kind of knew that something was really wrong; in some respects it was a bit of a relief to finally have an answer to the many unexplained questions I had about my ongoing health issues. It was kind of like saying, “See! I was not bull shitting – there really was something wrong with me all the time”.


A little note to Dr.Seuss – I love this little quote from Dr.Seuss i hope he does not mind me placing it on my page for everyone to enjoy. My sister sent me this a few months back and i have a copy of it by my bed to help me smile…

Well that’s me started I don’t want to bore you so that’s all for now, I hope you come back and join me on my personal journey…

Amazon Lady

What does M.S. really stand for.