Farewell Dad

Dad

Today 22nd April 2015 it is 12 months since my dearest Dad went into hospital… And it seems fitting to choose this day to publish this blog saying farewell Dad. My dear Farther passed away in June 2014 at the young age of 78, Dad had not had a day’s Illness in his entire life or at least had never been so sick that he had to go into hospital, he was also quite squeamish and would never have voluntarily gone to hospital. He asked mum to take him to the doctors  because he was feeling unwell… She took him to the local clinic because they did not think things were too bad.

The Doctor transferred him straight away by ambulance to the heart hospital where they did some tests and told him that he had a blockage in his artery and would need an angiogram;the procedure was straight forward and mum told us that he just needed a stent fitted to open up the blocked artery. I don’t know if it was a miss communication or because Mum just wanted to believe that he was ok… but next day mum was told that Dad had to have double bypass surgery.

We all thought the worst because although he was a strong man and reasonably fit for his age, he was 78…but by some kind of miracle he made it through the operation. We were all quite relieved, although still on tender hooks because he was in ICU on a heart monitor and all kinds of other devices. He did wake from the anaesthetic after about two days and when my sister went to see him she reported that he looked quite strong and well.  But that day, unbeknown to all of us we were about to embark on the most horrendous emotional roller coaster ride that was to last a total of 46 long days.

Dad got pneumonia and had a collapsed lung, common after that kind of surgery but they had to insert a breathing tube when they did the operation and due to an undiagnosed Goiter (under-active Thyroid Gland) which I subsequently found out on top of MS and was also suffering from an under-active thyroid (more tablets)anyway back to Dad…the operation was successful but complications set in and eventually Dad had a massive heart attack, they did get him back but he would have been left with brain damage and my Mum had to make the very difficult decision to let nature take its course and he passed away peacefully. Fortunately my sister was there with Mum and they had a chance to say their final goodbyes.

My dad was a communications expert and was still working up until 22nd April when he was admitted to hospital. My sister had told me stories of how frustrating it was for such an intelligent man to be unable to communicate. He had a breathing tube, a feeding tube and a tracheostomy tube because he had trouble swallowing he could not speak and could not tell people what he wanted.

Receiving that phone call from my sister saying hello sis… are you on your own? (No i was not on my own, my husband was with me). She then said you may want to sit down – and the words followed “Darling i have some bad news…Dad passed away this morning” . Well as you can imagine i was in total shock, I don’t even remember what I said or how I felt… just numbness i think. I had to tell my sister that i had to go and put down the phone… i know she understood and i arranged to call her later.

My one big regret was that I couldn’t be with the family at Dads funeral, but we couldn’t afford the airfare and I don’t think I could have managed the flight anyway. And I didn’t what to detract from my Dads day with people fussing around me and trying to organise, transport and wheelchairs etc.

I sent this poem to my sister and she made sure that it was included on the memorial bookmark, that was handed out at Dads funeral. The celebrant read the verse and made a very special attempt to include me  in the ceremony, even though I could not be there.

GONE BLACK

I do miss you Dad and i always will, but I have a photo of you right by my side and i look at it always and remember you happy smiling face.  I know that you are still with me in spirit at least…. X

So much has happened since that horrible day 12 months ago. I have achieved so much and one good thing that has come out of losing you is that your two daughters are now reconnected… More about that next time.

Girlfriend regrets

GIRLFRIEND

girlfriends6875328

Girlfriend Regrets….Back to my school life. I meet a girl that I formed a great friendship with and as she lived walking distance from my home.  I would go over to her house, or she would come to mine, we spent a lot of time together. She had an older sister and a friend across the road so all four of us became good friends. We went through so much together… all kinds of  ups and downs, boyfriends, husbands, kids, divorces, re marriages, jobs,holidays anything and everything together. Our kids grew up together played together went on holidays together and we often had dinners and bar-be-cue together…until bang! it all fell apart.

I was working as a manager for a local company, one of the girls needed a job so I recommended her to my company. She got the job and was working for me, was it difficult?  No not really because outside of work we carried on as friends with the others, until one year I went to Australia for my sister’s wedding. I got permission to take the leave but they weren’t very happy because it was our busy time and nobody was supposed to take time off. Anyway off we went but things had changed on my return… i can’t put my finger on it but it just felt different. To cut a long story short it was a very long time ago so things are a bit vague but I seemed to remember I lost my job and  took the company to court. Then the friend was used as a witness for the company and so regretful things were said, on both sides.. I  questioned her relationship with one on the directors, and  that resulted in me losing the case and most importantly her friendship. It didn’t seem to matter what I did I couldn’t take back what was said or done.

It became very difficult with the rest of the team because when there was anything going on, a party or something, we could not both be invited at the same time, so the dynamics of the group was becoming so difficult that I decided to drop out. They had all been friends before I came along, so it seemed only fair…I just hoped that thing would calm down and one day things could get back to where their had been…but 15 years later they are still the same, even though lots have happened to us all.

My big regret is I have nobody to talk too, no friends I could confide in, call or email, no friend to cry with, no one to listen. But recently after watching a girly film on TV about a couple of friends that grew up together then fell out but got back together years later, It made me think of one of the three girls, so I took the bull by the horns and sent her an email asking if we could put behind us what happened and try to start again…

I am so pleased to report that she replied by saying that there was nothing to apologise for a yes it would be lovely to meet up and have a long awaited chat. We have tentatively arranged to meet up somewhere for lunch at a place accessible for me . Well let you know how it all goes. I am hoping that my girlfriend regrets can become a thing of the past from now on. Keep everything crossed for me.

 

 

Well traveled

Well Traveled

I have been working through all the stuff i have written and some of my draft blogs are a little bit muddled up… so in an effort to get back on track and not lose the momentum,  i have decided to add this post to give you all a little info about my past and how things started my well traveled life.

MY Life

I was born in England in 1959, the first daughter of English parents, when i was just 6 weeks old i flew to Africa with my Mum & Dad. Two years later in Nigeria, my sister was born followed by my brother two-year after that. We travel quite a lot when we were young starting in Africa. My Father had a good job that required him to move around( he wasn’t in the forces) and of course we  went along, so we had a great start to our young life’s seeing the world. We eventually came back to the UK in 1969/70 can’t remember when, but started the local primary school which was walking distracts from home.

School

I went to a local comprehensive school and I didn’t know anyone there so was a bit uncomfortable. I was very tall so a few new pupils thought I was a teacher. I wasn’t particularly cleaver or good at most subjects, but I found that i was good at singing. My music teacher also thought I was a good singer and he wanted to make a good impression with the head master, so i was excused certain lessons  when ever there was a music competition or end of term musicals. I always had a part to play or sing in and missed so many general lessons that none of the other teachers had a chance to discovered I was actually dyslexic, I just had to include this image found at www.cornwalldyslexia.org.uk  it just made me laugh.

I went though the whole of school without anyone figuring out there was a problem, they all said i was “lazy or just couldn’t spell” that was in every page of my report, but then it wasn’t thought about not the way it is today.

Work

I struggled all my working life as well, I left school with only one CSE that was in something like cookery I think, I could talk the talk but couldn’t sit an exam, I would just freeze.  I may not have had a good education but class myself as worldly-wise and sensible and able to deal with most things, with sense and confidence. Anyway i managed to get a job and I started work only a week after leaving school and my working life started… I didn’t stay in any company for more than 5 or 6 years as I than became board, so I moved on to the next job. In between times i meet and married my first husband who was 14 years older than me but it worked well for 6 years. During that time my parents started globe-trotting again, first to Hong Kong then Taiwan and finally Australia where they took up residence, and have been for 25/26 years.

Family

My brother was the first to leave England… He decided to go off on a trip to Australia and New Zealand with a friend of his. He travelled around as a backpacker working where ever he could, he even got a job on a Prawn trawler somewhere, he had an uncanny way of always falling on his feet and was always being taken in and fed by complete strangers. He eventually ended up in Australia and married a lovely German girl who he met in China (I think) anyway they have two  gorgeous girls, who have a lovely life living in Sydney over looking Bondi beach.

My parents bought a plot of land and built a house in Victoria in a small town about 40 miles from Melbourne, and that is where they stayed. My Uncle & Aunt were in Australia too and mum & Dad loved the place so much they never came back to England. They continued travelling all over the place with different jobs Dad had and some years ago I spent some time visiting them in Hong Kong where they lived for a few years.

My sister followed them out and settled down not far from my parents with her Australian husband and their son, during those years I divorced and re married, my present husband was an only child and his parents were still with us at that time, living about an hour away and we also had a son and felt that taking their only grand child to the other side of the world wasn’t an option. We did fly over to see my family a few times, and fell in love with the place… but sadly we left it too late to be able to relocate to Australia.

Well hope that gives you a little background history about me and my  well traveled past.

 

My top ten useful things

Hello again!  hope you are still with me…

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I have had a few down moments of late but on reflection I realise that there have been far more ups than downs…The Toilet training,  Stair lift fiasco, Hydrotherapy splash & giggles plus many more recent adventures that as yet i have not posted, all in all there has been a lot to laugh about. As the saying goes ” laughter is one of the best forms of medicine”.  I do hope that you have found my journey so far to be humours and enlightening … keep reading and we can stay positive together.

I have tried to put together a list of things that I have found useful on my own personal journey with MS and would recommend anyone that has been diagnosed with MS to consider the following list of My Top Ten Useful Things

1

One of the best things I brought when I left work was a tablet. I don’t know what I would do without it. I can only type with one finger but It hasn’t stopped me buying things online. Warning this devise can be detrimental to your bank balance… please try other things on the list.

2

Join your local MS Society and on-line forum if they have one. you can talk to people who are either going though or have gone though all the things that you want and need answers too. LINK TO MS

3Reserch

Search out all the full names and descriptions for those tests you have been though or are going to go though, find out what there stand for and what they mean. Being informed and understanding what is happening can be very useful and will help.

 4

keep a list of all your up to date medication making sure you change it if you are giving something else and also the dosage. Also write down all the medical people involved in your treatment, i.e. Doctor/Consultant/MS Nurse/Physiotherapist etc. It is alway good to build a good relationship with your health/ service providers. They are the experts and are there to help.

5

Have an overnight bag packed and in a place that everyone knows where it is… just in case you need to go into hospital for any reason. I am so relieved that i had that bag ready to go when I broke my ankle. It saved my husband a lot of fussing around and he just had to grab the bag and i had the things i needed. ( hand picked by me!)

6

I have a small alarm on a cord in my walker and another by my bed downstairs at the moment, it is connected to a base unit that is currently upstairs next to my husband at night, if I fall of get into trouble I can push for help( you may not need it yet by I have just put the items that I have found useful to me)

 7

I have a  resistance band which I also purchased on-line that I am trying to use each day to build up my arm and core strength. Just simple stuff can be useful… a squashy stress ball keeps my hands stronger. Breathing excersises help to calm me when feeling stressed. Getting up and trying to stretch my back up against a wall – just walking around the coffee table is good try and keep moving as often as possible. You can also exercise your muscles without going anywhere… a bit like the pelvic floor excersises they tell you to do when pregnant. Clenching and releasing your muscles can actually help to strengthen and keep everything a little more toned.

8 

or even write a blog… Writing everything down or keeping a diary can be quite useful when your having a bad day… Being able to read through some of your own comments can lighten your sprits and also serves as a great information source to gauge how well you are progressing or (unfortunately how your symptoms may be deteriorating). Its also useful when you have to visit your GP or MS specialist, you will have answers to some of their questions in your very own personal health log.

9

I read somewhere that Art, of any kind can help with stress and anxiety so thought I would try it.  I looked at my favourite on-line store and found a book called Art Therapy an anti-stress Colouring Book and brought some coloured pencils. I’m hooked! and I find when I start colouring in a picture or pattern I get lost for a good few hours… takes my mind away from the daily stresses. http://www.bookdepository.com/Colour-Therapy-Cindy-Wilde/9781782433255

9781782433255

10 

  • Grab stick – I brought from a supplier on-line a couple of grab sticks one I keep with me the other is upstairs by my dressing table.
  • over the chair table- The other item was a table that is called an over the chair table, and that’s exactly what it does, and also tilts up so I can use for my iPad colouring etc.
  • pill dispenser-  Buy one that is clearly marked with the days of the week and with at least 5 sections to put your morning/midday/ evening/nighttime tablets in, plus a bag for the overspill.
  • Bra Clip thing-  Found a useful cleaver idea for ladies I have a problem with a couple of bras where the shoulder straps are constantly coming down, I’ve tried altering them but the back straps just ends up too high, well I’ve found a little gadget that for a couple of pounds solves the problem http://www.glamoursecrets.co.uk it’s a plastic strap that ties your straps in too wards the middle, it can also enable you to wear different tops without changing your bra like halter necks and cut aways. I thought it was great and worth passing on the secret.
I hope something on the list help you. Please feel free to place a comment about anything you have personally found useful and we can add it to the list. Keep smiling!

Escape From Myself

Escape 2

Today I was listening to the radio and one of the guests (I can’t remember who, or what they were discussing), but he said something that made my ears prick up, something that encapsulates exactly what I would like to do… ESCAPE FROM MYSELF!

I try to remain as  strong as humanly possible… and try to keep my blogs  lighthearted but believe, me some days that is no mean feat! I would like to share some of my deeper feelings and try to explain how some days it is very difficult to ward off the negativity that regularly tries to creep into my life.

I may have MS but as the logos say … But MS does not have me! I am still a woman with genuine needs and desires… I need to feel wanted, appreciated and important. I don’t need to feel useless, worthless or a burden on people. Sometimes I just want to escape from the me I am now… and somehow find my way back the me I used to be before MS chose me.

A flash back from the other catheter fall out…Just a little problem today my Catheter fell out, that was at 4.55pm so called the number I have for my district nurse, but it went straight to answer phone, left a message and then called my Doctors surgery to ask if they had a different number and explained why I needed to get in contact with a nurse. I said to my husband “well we could have a quickie”as i haven’t got the catheter (which he hates and can’t even stand the sight of). Any way i jumped in quick before he could comment and i added ” we didn’t have the time and I have Probably forgotten how”,  He just grunted. I love this cartoon it made me laugh so much and hope it makes you laugh too…

On a more serious note…My husband is not dealing with all this very well;which in turn depresses me as there is nothing I can do about it. Each morning he comes in to get me up with a long face and huffs and puffs as he takes things or moves things around before helping me into my wheelchair. He does all this without saying a word…I think we must have at least two or three arguments a week, normally I start them and sometimes its only because I ask for something and his face is like thunder, as if I’ve asked for the world. It is normally only little things like… can he please (alway please and thank you all day long) bring me in an apple when he’s next in the kitchen, I know it’s hard for him but sometimes I just shout out in a rage WHAT DO YOU THINK ITS LIKE FOR ME, I CANT DO ANYTHING but eventually we both calm down, he normally comes over and gives me a kiss and says sorry.

I gave him a Valentin’s card this year (something we don’t normally do) and the front said all I need is a hug, inside I said all I want for Valentin’s is a kiss and cuddle, I also brought some nice massage lotion that I said I would use on him when I eventually got up stairs, and to keep it by the bed to remind him. I am constantly asking him for hugs and kisses sometimes he does but most of the time he doesn’t, so I do feel deprived.

I try so hard to look the best I can, I do my hair and makeup every day, wear something that matches with a scarf that goes with the outfit, but still finding it hard to feel attractive. At least when I was at work people would sometimes say “you look nice today”, or “I love your scarf or shoes or outfit” but I don’t see anyone from day to day so no complements. It’s so hard to feel good about your self, especially as I can’t stand and see myself in a full length mirror, i can only see my face though a small hand held one, mind you maybe it’s a blessing as don’t think I really want to see the whole me at the moment. I have put on so much weight, but am doing ok with the diet so pleased with myself, had to say that as nobody else does.

Over and out from a somewhat sad amazon-lady. Hope to come back tomorrow with some more bright and positive stuff.

Bubbling Bog Blog

Today I felt a bit low … not really sure why but I noticed some blood around my catheter area, maybe i have another infection or something. Anyway I have booked for the nurse to come out and check it tomorrow…

I had emailed my sister/editor and told her I was feeling a bit glum and she asked why… I told her my story and she sent a message back saying  “don’t be down”- “don’t loose momentum”  – “Just keep on writing”.  I needed that encouragement and my momentary sadness turned around into today’s masterpiece. It was originally going to be titled Grumpy Old Man and was to be a small bitch session about my hubby and his day-to-day antics, but I will save that one for another time.


Today’s household issues have given birth to the…Bubbling Bog blog

Large Bubbling Bog Blog

My sister asked if I was upset because the grumpy old man had upset me, but that was not the reason. I sent an email back saying that he was unhappy because he thought that something was covered on the house insurance and it possibly was not… anyway if I go on I will spoil the whole story so I will tell you more about our email communications later.

Our son came over for the Easter weekend, he caught up with his mates and some much-needed sleep, he also spent a lot of time eating and soaking in the bath. (His flat is shared with 10 about others i think, so he doesn’t get too many opportunities to indulge in little luxuries). That’s what Mum & Dads house is for isn’t it? On Sunday evening I went to the cloakroom to spend a penny and quite surprised  when I stood to see bubbles coming out of the loo.

At first I thought that maybe this was just another MS symptom “Bubbly Bladder” 🙂 or maybe the nurses had not used “bubble-free detergent” when they cleaned the catheter. (that is a joke.. they did not do that at all).  I must stop my mind going off into ridiculous tangents.

Anyhow I called my husband in to have a look, but he didn’t know what was wrong; he pulled the chain but couldn’t get rid of the bubbles so we left it for a while and eventually the bubbles did subside… I told my husband that it must have something to do with the bubble bath our son had just had but he said it couldn’t have been that and just scratched his head. Nothing further happened until today Thursday…

When my husband went to take the rubbish out he found the manhole cover down the side of our house was covered in toilet paper, baby wipes and all sorts of stuff was floating up from the depths of the drain. He tried to look under the manhole to see if he could clear it with a high-pressure water jet, but there was no chance of that, The baby wipes, loo roll etc was right to the top!

I knew it was my fault because I’ve been putting baby wipes down the loo… Ok i have owned up and it is out now i am the guilty party!

'The snake and plunger didn't work, so I'm going in...'

I have just legitimately paid for this image but can not get it to download… Just thought i should write that to cover our butts 🙂


I realised now that I shouldn’t do that and have since purchased some toilet wipes, that can be disposed of down the loo… but unfortunately the damage had already been done. I thought we would have to pay for a guy to come and unblock the drains, but thank goodness our house insurance covers it, so lucky for me a man is coming out tomorrow, keep fingers crossed he can sort it out without too many problems.

Another exciting chapter in the Amazon-lady household… what next?

 

 

Water baby adventure

free-vector-cartoon-mermaid-02-vector_094392_Mermaid and unicorn vector (2)Water Baby 2

Today I became a water baby…I started the first of six one hour, weekly Hydrotherapy sessions which, should help to strengthen my core body strength, and in turn help with my walking and strengthen my ankle plus who knows what other benefits it may offer in my quest to make the broken bits of me new again?

I must admit that I was a bit nervous to start with, not knowing what to expect and not really knowing what was going to happen. My husband took me into the changing room and helped me take off my shoes, trousers and top, (I had put my costume on at home so that part wasn’t too difficult). Then he wheeled me out in to the pool area where I was transferred to what I can only describe as a white plastic chair with wheels and arms that came down to hold me in. A hoist was then attached somewhere behind me and I was lifted up and swung over to the small pool then lowered into the water. I must say I was pleasantly surprised because that water was lovely and warm.

A nice young girl who was part of the team was in the pool to assist me and show me what I needed to do, first I had to start walking across to the other side of the pool, holding her arms. It was quite a small pool so I only had to walk about a dozen or so steps, but it was great and the water really does support you. I felt quite a sense of achievement because I can’t walk that easily on dry land! But it was good to finally have some mobility back in my body. Being submerged in that lovely warm water was quite a treat it has been years since I have experienced that, I use to enjoy swimming and loved warm baths but both unfortunately those little pleasures are now a thing of the past.  Anyway back to the Hydro pool… I held on to the bar at the side and did a few leg extensions and stood up on my toes to strengthen my legs. The time went so fast and before I realised it was time to get out.

My lady helped me back to the chair that had been lowered into the pool and then I was hosted back to the poolside and to my waiting husband. He took me back to the changing room where I decided to have a shower to wash off the chlorine. I stayed on the plastic chair because I thought it would be easier, however as I tried to get up to take off the bottom of my swimming costume I slipped as unfortunately my husband had forgoten to put the brakes on so I ended up on the floor on my bum. My husband did a quick check around the room but could not locate a block and tackle as he could not lift me up on his own so he helped me put my top back on so I looked a little more presentable and went to find help.

After a very short wait I once again became centre of attention. One guy after other streamed in… until eventually two pretty fit looking guys came in with a hoist and lifted me back into my wheel chair to finish what I had started. After all that I put on my trousers I decided to go “commando style” with no undies it’s hard enough for able-bodied people to struggle to put on underwear after a dip in the pool. Twenty minutes later we emerged, said good-bye and thanked everyone for the help, then headed back home.

Once safely back home I had breakfast, it was 11.30am and fell asleep and did not wake up until 5pm. I must have needed the sleep or was just exhausted after my excitement filled day. The day was almost over and I was rested and content remembering the events of the day, surely nothing else could happen …my day had been quite eventfully already.

Hold that thought! I decided I had to go to the loo and low-and-behold my Catheter had come out again “complete with inflated balloon still intact”, very strange…here we go again. I called the district nurse team and got an answer machine message telling me to call my doctor’s out of hour’s surgery. They said they would send a fax and hope the out of hour’s team would pick it up. By 9pm we had heard nothing so I called another number that went to the hospital district nurse dept who said they would call the office and see if someone picks up, well at 10.30 pm two district nurses turned up.

I am still in the conservatory and the light is not that bright at night (during the day it has brilliant light) but the two nurses struggled to see my private parts well enough in the dim light and one of them asked my husband if he had a bigger torch. She returned with a massive 500-candle touch and they positioned it to see what they needed to see. I had to have a silent chuckle to myself It was not a pretty sight, and not at all ladylike… there I was spread-eagled on the bed with a nurse each side armed with this massive torch trying to replace the new catheter…My hospital bed was lit up like an airport runway and the torch bearing nurses either side of me were like two helicopters waiting to land.

Enough excitement for one day… What will tomorrow bring?

Until my next adventure. ..goodnight!

 

Stair-Lift weigh in

Stair-Lift weigh in. Today was the day I was not looking forward too, in fact i was really dreading the visit to the stair lift company. Apart from the fact the journey was an hour and a half in the car (at least the sun was shinning) I had worked myself up into such a state and was so worried about my weight (if you can remember I had told the Guy I weighed 18.7 stone) when I now weigh 19.5 stone, the stair lift has a maximum weight limit of 19.7 stone so I was worried.

I was 20.5 stone  8 weeks ago when my Physio weighed me and to my horror I had put on 2 stone in the 8 weeks I had been immobile with a broken leg and ankle. I had already put 2 stone in two years since leaving work, and at this rate it doesn’t bear thinking about. I have now put myself on a strict no carbohydrate diet, it must be working as I’ve lost a stone in 8 weeks so I’ll keep going.

7297d-ww-diet-pills-cartoon

Anyway back to the stair lift… When we finally arrived we were met by the guy who came to see us originally. They had loads of stair cases with lifts installed, but I couldn’t see any scales. Yes! I was wheeled round to the lift I was hoping to have installed at home.

First test…could I get into the seat with the arms put down, tick. Second Test…  would it work with me on it and go up the curved stairs?  I held my breath as we slowly when around the bannisters and to my horror, it stopped. oh God that was it I failed, I wasn’t going to get a lift, I would never see my bedroom again, never sleep with my husband, never use my our shower, never see my lovely clothes in my wardrobe, my world would be forever down stairs. I felt like crying right their and then. But just then the guy said “great” it shows that when you hit something as your knee just did it shuts down, so just press the button again and off you go,to the top and back down again. Big smiles and huge tick.

As soon as we were in the car and away from the company I sieged with relief… thank God that was over so by the end of April, fingers crossed we should have a stair lift delivered and installed, panic over!

Get out of Jail Free!

Get out of Jail Free!

get-out-of-jail-free-card

Get out of Jail Free! I Watched a Film “My Father in Life and Death”on channel 5 last night Father had Motor neurone disease, it was a very moving film that was shot on video by his son who had been filming his family from a young age. Mother, Father Twin Brother and 2 Sisters in the family lived a great life, run a ski resort and all skied very well.  In 2001 the Dad was diagnosed with Motor neurone disease although devastating they did have experience of this disease as their uncle the Dad’s brother has MND and was fairly advanced to the point he was completely unable to move or communicate and had either passed away or was certainly at the end of his life.

Well the son with the permission of all family members including Dad carried on filming even when he received the diagnoses, he was told by his consultant that his prognosis was he had between 18 months to 2 years before he would die. Anyway as hard as it was to see the family and the Father go though his harrowing progress there were instances particularly his wife I found a comparison with, yes I know my MS is not the death sentence that this guy had with MND but the comparison was how a life changing disease can affect everyone concerned, it sometimes is very easy to forget while worrying and getting angry with how things effect you, to forget the people around you and that came across very well on the film, it was a thought-provoking film it made be think again as to how my husband must feel.

The Dad had spoken to this wife with the help of a computer like Steven Hawkins that he wanted her to find another man to share the rest of her life with after his death, that family was very open about their feelings there are an inspirational family if only more of us could deal with death or the prospect of death in that way! They even had a vicar to visit the family to discuss how the funeral would be and how the Dad would like it to be and what he wanted to be said, the whole family joined in.

My husband didn’t watch the program, it’s not his thing but I did tell him the gist of it …I told him that the Dad had told his Wife to go and find another man to fill his shoes when he goes, I said to my Husband would he like me to give him a get out of jail card, he replied that he couldn’t afford it and no darling! I wouldn’t and couldn’t replace you, he never disappoints me with his very dry humour.

Get out of Jail Free!

 

 

Medication

MEDICATION – MEDICATION – MEDICATION 

 

medication-cartoon

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Medication. I have Just been listening to the News reporting on the latest findings about HRT and they said, if i heard it correctly, there is a 1 in 1000 chances of getting ovarian cancer, and still a high rise of breast cancer as well. I have recently stopped my HRT patches which I was taking for over 10 years but when I was in hospital with the broken leg and ankle i was told to stop the HRT. This is because the injection I had to have for 6 weeks after the operation to stop blood clots would interfere with the effectiveness, so I stopped.

But the report did say even if you stop the chances are still there for a long while.

I can’t remember if I mentioned in one of my last page that I was also recently diagnosed with an under active thyroid and high  Cholesterol, either of which may have contributed to my rapid weight gain… So far during on my MS journey I have tried various medications, one of which was a 6 week course of steroids, normally something that is given to Relapse & Remitting (RRMS) not Progressive MS sufferers, but I was willing to try anything.

As expected it had no effect on me apart from edema(swelling of most of my body) but hey had to try it. Also one of the side effects of steriods is weight gain, so can’t win really.

I have tried and tested a vast array of medication over the months,  some worked  and some didn’t but I think for the moment we have got it right.  Apart from my ankle, I’m not in pain. Which is fantastic, mind you that doesn’t mean it won’t change at some point but now things are good.  So my advise to anyone would be to follow the advice your given, ask question and do your own research… but you have to weigh up the benefits against the side effect of any medication. It is  also a good idear to get the medical profession on your side because if you are seen to be someone who is cooperative and takes there advice, you will find that things will defiantly go in your favour. The same goes for the Physio team keep up with your appointments and try everything there suggest.

Medication on now that seems to help:

  • Atorvastatin 20 mg 1 x daily at (cholesterol lowering)
  • Baclofen 10 mg 1 x 3 times a day (muscle relaxer)
  • Clonazepam 0.5 mg 2 at night plus 1 extra is needed (treat seizures)
  • Duloxetine 30 mg 2 at night (anti-depressions)
  • Lactulose 3.3 g/5 ml 25 ml at night (constipation)
  • Levothyroxine 50 mg 1 x daily (under active thyroid)
  • Mirabegron 25 mg 1 x daily in the morning (overactive bladder)
  • Pregabalin 100 mg 1 x 4 times a day (neuropathic pain)
  • Ranitidine 150 mg 1 x twice a day (prevent stomach ulcers)
  • Solpadol (paracetamol & codeine)30 mg/500 mg 2 x four times a day (pain relieve)
  • Quinine Sulphate 200 mg 1 x daily at night (leg cramps)
  • Suggested by my nurse:
  • Evening Primrose Oil 500 mg 1 x daily
  • Omega 3 1000 mg 1 x daily
  • Vitamin B12 25 mg 1 x daily
  • Vitamin D3 25 mg 1 x daily
  • Zinc 1 daily

Quite a lot but if they work, and I need them then so be it.

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