Multiple Sclerosis

Sisters Reunite

After sharing my last few stories with you … it seems fitting to tell you all a little tale about my sister and I…

I don’t remember why and i don’t really remember how log ago it was! But my sister and I had a falling out many years ago…Over something quite ridiculous probably, but i think that the distance between us played a part. We were never really that close when we were younger; but we are sisters all the same!

I think it is very difficult when you live so far apart, that your individual life’s naturally go off in different or separate directions… having a phone call “once in a blue moon” so to speak makes it very difficult to stay connected… not because we did not care, just a natural thing that happens when you live separate sides of the world. On the occasions that we did speak we had very little to talk about she would say that it was 40 degrees in Australia and i would reply saying well! its 5 degrees and freezing here. We both had similar issues, dealing with husbands, kids, bills and the normal everyday stuff… i know that i look at things from a different prospective i believe that we both needed each other for emotional support and friendship… But for some silly reason we just grew further apart.

We did not speak for many years.. i think we both wanted too, but it all seemed just to difficult to pick up the pieces, so we just didn’t even try. It was not until our Dad became ill that an opportunity was opened up for us to start to communicate. My sister would phone me almost every night after she had seen Dad at the hospital and keep me updated on his progress.

After Dad passed away my sister became quite depressed and eventually went to see a woman to talk things through… This was great for my sister because i could hear how much more positive she had become day by day, just having someone to talk things through. She had buried herself in her office for almost 6 months and was dealing with the grief by creating a book for Dad… She had always loved graphic design and although she had no formal training she was very creative. She sent me the pages one at a time as they were finished and it was absolutely amazing… It had started as a way for her to get everything off her chest but finally evolved into a photographic creation with rose images of all kinds and all different colours that she matched to pictures of our dad… then added poems and words to compliment the pages. The book grew and grew until it reached a massive 80 pages, but it still has not been printed. The book was for our mum, and i think it was a way for my sister to say to our mum how sorry she was that Dad had to leave. Mum & Dad had been married for 57 years and were inseparable and definitely “made for each other”.

The birth of Amazon-lady

Anyway the lady that my sister had been seeing suggested that she should write a blog… My sister told me this and she said that i should start a blog of my own. She said that it would help me get things off my chest and maybe help me to connect with other people in similar situations. I did some research and took the first steps… I secured the domain name for Amazon-Lady and that is how it started. My Dad was a computer guru… but neither my sister or i were that knowledgeable about the intricate stuff, but together we managed to figure it out. My sister became my editor and day by day i would send an email with my stories.

I was never really good at writing but for some reason the words just flowed out of my head and my fingers danced their way around my iPad keyboard. I was on a roll and it just kept coming… story after story until we had about 25 emailed stories that had travelled through cyber space from UK all the way to Australia and onto my sisters computer.

My sister has been a great help over the past few months… she has had her own issues to deal with which started before Dad got sick. Her husband had a heart attack and although it was fairly mild, he had to go into hospital for a few days and had a stent fitted… unbelievably…. Dad went into hospital two weeks after that. My sister had been studying for her certificate in aged and community care when all the family dramas started. Anyway! somehow she has managed to finish the course and do her placement and then she was offered a job as a carer with the local council. She only wanted to work part time but in her scrambled head space, she had indicated that she would be available full time… Well we all know how hard it is to get a job nowadays, so she decided to carry on and see how things went. She has been working full time now for the past 4 weeks and that is part of the reason why my blog posts have slowed down. I have been keeping up with the writing but i always like to run things by my Sister/Editor first ” Just incase the liaisons in my brain have written something that doesnt make sense”. Anyway back to my story….

We researched all kinds of stuff and finally came up with Word Press to create the blog Blue host to host the blog and then we were set.…the one person who has been a great help with the setup is a guy called Court Tuttle and his web site was invaluable and is a great place to get lots of practical information about how to set up a blog have a look at his page here. http://www.theblogbuilders.com

We have had such a laugh and have achieved so much over the past 12 months… I am very sure that Dad would not only be surprised at what we have managed to create together, but i am sure he would be very happy we have patched up our differences but above all he would be very proud of his two daughters achievements.

I hope you enjoyed reading Sisters Reunite… Thats all for now! Amazon-Lady

5th June 2015/42 Comments/by Amazon-lady

Multiple Sclerosis

The long awaited addition to the household…

My stair Lift is finally here…

At last my long-awaited stair lift has arrived…. On Friday I was so excited to open the door to the lovely guy who fitted the lift, it only took him 3 hours and now it is ready to go hooray!

The first step was to find a Crash test dummy… I am by no means implying that my hubby is a dummy…because he is not, I am very grateful to him for stepping in as a volunteer to try it out before me.
I am pleased to report that the test run was a complete success.

Now to the next step! I had to make a list of all the things down stairs that needed to go back upstairs….

First delivery run list

Everything in the cloakroom I have been using for the last 8 months to wash and get clean including lotions and potions.
All the catheter bits and pieces.
The Zimmer frame for when I get upstairs and off the lift to walk as best I can to the beautiful bathroom and shower and also our bedroom and my beautiful Non-Hospital bed.
All the boxes and bags that used to be scattered around me. Hair stuff, makeup, moisturiser etc.

I didn’t realise how much stuff I had accumulated in those months down stairs. Anyway hubby took a few essential things up first and after diner and a couple of hours before I would normally go to bed off we went… “My first trip upstairs for absolute months” It was a bit frightening at first but I positioned myself on the seat and slowly ascended to the top… it was such a good feeling to finally see the upstairs of my lovely home… The staircase is curved at the bottom and very narrow, so it starts with me facing side wards, then off I went around the corner of the staircase and up facing backwards till it gets to the top. Then it goes round another corner at the top of the landing, this time sideward’s. It felt like I was on one of those kiddy rides at a fairground. Finally I reached my destination and prepared myself to disembark…. But guess what? A problem (isn’t there always something?)

The plan was to get off where the lift stops and then the simple steps off getting to the Zimmer frame… But it is too wide to go passed the wall, which has a radiator on it and the rail that brings the lift up. We had to stop the lift at the top of the stairs and my husband stood on the top step “just incase I felt like falling head first down the stairs again”. He helped me up so that I could hold on to my frame to go to the bedroom. Hey! There is always a solution to a problem. I’m sure the council guy will not be happy with that due to “health and safety”, but we will just have to get our nice guy from the Physio dept to come and take a look, and maybe come up with a more suitable maneuver.

Anyway problem solved for the time being… The next few steps of my journey was something I have been waiting for such a long time… I stepped into the bedroom and it was just beautiful. My husband had made a really big effort he had vacuum and dusted “love him”, he had put beautiful bed linen on our bed and a lovely bunch of flowers on the dresser, to welcome me back to our room. I can’t begin to describe how special it was for me to feel that finally I no longer have to be exiled in the cold conservatory downstairs… I am finally back home, in my room with my creature comforts around me… I am one very happy Amazon-Lady.

The next issue, which I had never thought about, was the height of our bed. I have always loved our bed but now realise that it is much lower that the hospital bed so as I maneuvered myself to sit down it was less than a delicate landing… thump down and landed from what seemed like a great height. Oh well I need to master that one!

The next test was to get undressed and ready for bed… I had a problem getting up to get to the en-suite, which is right next to my side of the bed. As I said the bed is very low so it Is quite difficult, but once again with my husbands help I managed to get hold of the rails on the wall (supplied by the Physio dept) and get into the en-suite,did what I had to do and gingerly got back to bed. I plugged myself into my night bag, positioned my pillows were I thought I might need them and tried to get comfortable, but try as I might I just couldn’t. I slept very little that night because I can’t lie flat on my back, I have a high arch in my back and the hospital bed and air mattress solved that problem because I could change the position of the bed electronically. But try as I might, nothing worked.

I couldn’t even turn over because I have this blasted tube going into a bag on the floor and back to the core strength thing … I don’t have much core strength so I couldn’t even sit up without slowly lifting my left knee with my hand to push it off the bed and hoist myself up.

I think I need a rail or something… like they have over the beds in hospital, something I can grab hold of to help me sit up. I will ask the Physio guy or my M S nurse what they suggest.

I did manage this without waking my husband, and took a couple more painkillers and sleeping tablets, then did the reverse and laid down, had a terrible night all in all but my darling husband woke to see me wide awake at 5am, I unplugged myself from my night bag and he managed to roll me over so he could cuddle me and we both feel asleep for a couple of hours thank God.

The morning routine was made easier with our large double shower. I have a stool to sit on in the shower, my darling husband had found my special shower cream wash and shampoo and stood behind me and helped wash me… (God I needed that after 8 months of washing only were I could reach). He then washed and conditioned my hair and left me alone with the beautiful hot water cascading all over me. When I was ready to come out he helped me up and took the stool out of the shower, he put a towel on the bathroom floor so that I did not slip and helped me dry myself and wrapped a towel round my wet hair.
Then came the normal dressing, hair-drying make up on…and I was ready to face the world. “Or ready for my people” as my sister says, so with help from my trusty Zimmer frame I walked back to the lift and did it in reverse: got off at the bottom and grabbed my Rollator found my way to my chair. By this time I was totally exhausted so after eating my breakfast I feel asleep till 1pm, when I woke I couldn’t believe that half the day had gone, but at least I did it … I got back upstairs! Had a shower… tried to sleep in my own bead and said hello to my shoes, scarves and accessories…Hooray!
I finally feel normal again.

The long awaited addition to the household...

21st May 2015/154 Comments/by Amazon-lady

Multiple Sclerosis

Technology Rage

I can not find who owns this pic… but it describes exactly how i feel.

Technology Rage

Have you ever been so frustrated with computers and technology rage that you want to pic up your computer and throw it through the window? Well i have… This image above shows perfectly what it feels like… when you have spent weeks and weeks trying to figure out how to think like a computer, an still can’t get the finer points to work…. I have followed instructions exactly , i have search endless u tube videos and web page info sites but some things just do not work right…. I am going a little crazy right now. However we have come a long way… and we have learned an awful lot of stuff.

Here is a list of the jargon and “blog-speak” that we have searched and tried to understand over the past few months:

A blog – (short for weblog) is a personal online journal that is frequently updated and intended for general public consumption

Avatar – an avatar is a photo, graphic or image that represents you across blogs and other social-networking sites. This is not require nor used by all, and is sometimes displayed within the profile or comment sections.

Anonoblog – A blog maintained by an anonymous author,

Blogger – A person who creates and posts to a blog. Synonym of weblogger, though the latter is infrequently used.

Permalink – The unique URL of a single post on a blog, used when anyone wants to link specifically to a post rather than to the most recently updated page of a blog

Tag – A generic term for a language element descriptor, often used in blogs to identify the type or types of content that makes up a particular post.

HTML – This is short for Hypertext Markup Language, the language used to write web pages. Most HTML elements are written with a start tag and an end tag … , with content in between. It follows a tree like structure where common elements include??????

RSS – Short for Really Simple Syndication, a means by which users can subscribe to a feed, a blog feed for instance. Because content is published in a frequent basis subscribing makes it easier for users to follow content and updates.

Sitemap – A public directory or index of sorts to help users easily access pages of your website. Basically this is a page on your site where you tell users about key pages of your website by listing them in almost an outline format and then linking to those internal pages. This makes your content easier to find by users including search engines.

URL – This is short for Uniform Resource Locator … say what? Basically this is the address of a piece of information that can be found on the web such as a page, image or document.

Ping – An acronym for Packet Internet Grouper. Pinging helps to notify other blog tracking tools about updates, changes and trackbacks on your blog. One of the major differences between blogs and web sites, is that a blog allows you to “ping” (i.e. automatically notify) search engines whenever you update your blog (called “Blog and Ping” or “Blogging and Pinging”), where most normal websites lack this function and require you to manually notify search engines that you have added new content to your site.

(SEO) Search Engine Optimization – The process of employing different tactics to improve a business’s ranking in organic or unpaid search results to ultimately increase conversions.

Ok this may have been a little boring to those who are not really interested in the technical side of blogging but i just had to get it all off my chest… So thanks for reading this far! Its very very confusing… but its really great fun and they do say that an active mind is a health mind. EVEN IF IT IS A PRETTY FRUSTRATED AND SCRAMBLED ONE.

After all that i definitely need a lay down…. Bye for now, please don’t forget to fill in your details below. Thank you.

9th May 2015/158 Comments/by Amazon-lady

Multiple Sclerosis

Farewell to my M.S. Nurse!

Farewell to my M.S. Nurse!.My lovely MS Nurse is leaving to take a new post, I will miss her apart from being a very nice amenable and caring person I could always contact her by email in between appointments if I needed her advice. That makes so much of a difference as with medication she would suggest and email my doctor with the new or increase dosage of an existing tablet and my doctor would just sign the prescription and it would be ready at the chemist within 24 hours, that’s what you call service.

I have been with her since my diagnoses in 2012 and she has been a rock, not only when I was having problems at work but at the start of my MS journey. Having to try all sorts of medication and dosages. I tried steriods which is normally only given to RRMS relapse & remitting MS, but I was willing to try anything that was suggested. And that’s the key… always try what is suggested you never know something might work for you that doesn’t for others, for instance the steriods had no effect on me, well apart from putting on some weight but that would have been a small price to pay if it had worked.

We did experiment with different drugs some didn’t work but we kept on trying others until finally after sometime we found the right drugs at the right dosage. The main benefit is I’m out of pain and can sleep though the night, that is a great breakthrough, if you can live pain free and get a decent nights sleep which is something a lot of people take for granted. Having a progressive disease and finding something that works is something you treasure.

Anyway my nurse copied me into a letter(as she always does) that was sent to my doctor after our last appointment, she mentioned that I was having no problems following the fracture to my ankle and broken leg in September 2014, and that my stair lift should be installed in May after a long time of waiting, she told the doctor that a Rollator was issued to me by the Physio department and that I have a further appointment with them at the end of May and in between I am having a 6 week course ( as you know) in the Hydrothrepy pool which she hopes will help with my mobility,

she will speak to the Physio department about the fluid build up on my knee, which she suspects is because of my poor mobility and secondary to my MS and perhaps general wear and tear (God I’m just getting old and decrepit) but if my Physio thinks further investigation is needed she will deal with a referral to the appropriate sources. She told the doctor that I still had a catheter with a flow valve, but would undertake a trial with out catheter(TWOC)when the stairlift arrives.

The thing that did concern me is when I told her I was having cognition issues short term memory recall and word finding difficulties, she said in the letter(I can’t remember if she said that during the appointment) there is increasing evidence of dementia related in multiple sclerosis but this is rare incidences and that I should not be overly concerned. They will of cause continue to monitor my cognition and if necessary refer me for further tests.

http://www.ms-uk.org

I don’t know why I stupidly thought once I was diagnosed that would be it I would just get on with it, didn’t think I would be on this treadmill of testing for one thing after another. I don’t know yet neither does my nurse who will replace her, I just hope if he or she is half the person my nurse has been then I will be in safe hands and I wish my existing nurse all the best in her new position.

Farewell to my M.S. Nurse!

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Thank you Amazonlady

9th May 2015/121 Comments/by Amazon-lady

Multiple Sclerosis

The great wheel chair debate

I was searching on the net for a picture to go with this post and i came across this image by Adam Hughes… I love the way it portrays style & class of this lady in the wheel chair. The site is a very good read and is by a lady called Jill Pantozzi is a pop-culture journalist and host who writes about all things nerdy and beyond! She’s Editor in Chief of the geek girl culture site The Mary Sue (Abrams Media Network), and hosts her own blog “Has Boobs, Reads Comics” (TheNerdyBird.com). She co-hosts the Crazy Sexy Geeks podcast along with superhero historian Alan Kistler, contributed to a book of essays titled “Chicks Read Comics,” (Mad Norwegian Press) and had her first comic book story in the IDW anthology, “Womanthology.” In 2012, she was featured on National Geographic’s “Comic Store Heroes,” a documentary on the lives of comic book fans and the following year she was one of many Batman fans profiled in the documentary, “Legends of the Knight.”

http://www.themarysue.com/how-to-illustrate-wheelchairs/

In 2013 I had to “Retire due to ill health” from my job (lets just say it wasn’t my choice and leave it at that). And my M S has deteriorated majorly over that time. when I was working I only used a stick for a bit of support; I walked and drove and held down a fairly responsible managerial job. In the 5 years I was there I had only taken one day off sick, during all my tests prior to being diagnosed I took days off as holiday entitlement, so never took liberties. But I suppose loyalty and hard work doesn’t mean what it use too.

Well i am now less stressed as I don’t have to worry about constantly reaching and exceeding targets any more. My biggest worry, other than my M S Is about were the next penny is coming from and which bill will get paid first. My calendar is no longer full of meetings and client appointments Instead i have a diary full of appointments for the many doctors, consultant, physiotherapists, nurses and other medical stuff.

The one thing i do have now though is TIME…I have time to write this blog with my daily experience of MS in all it forms. I am constantly amazed at how things effect me that before this all happened I was never aware of, I didnt realised how being disabled( I still havnt got used to referring to myself as disabled) effects your whole life… from the moment you get up to the moment you go to bed. One of my biggest issues is wheelchair access or the lack of it in many situation, and I don’t mean just outside the home one of my biggest problems is actually inside.

Most homes if not all, unless specially built or adapted which is not always financially or even structurally possible, aren’t designed for wheelchairs, doors are not wide enough, going from one room to another can be too tight to manoeuvre (we have lots of gouges and paintwork damage to most of the doors and architrave) also getting in and out of external door ways with high thresholds and drops sometimes even small steps or porches are difficult. But until you get in a wheelchair you would never consider them to be a problem, well I suppose you don’t think you might be in a wheelchair so why would you, but these and others have now become an issue.

Most cloakrooms are not large enough to access useing a wheelchair either, ours is larger that most but if my husband wheels me in the door does not close and he has to wheel me out backwards, most homes that have cloakrooms are not even large enough to do that. At the moment I have just enough movement in my legs to allow me to use a Rollator to back into the clockroom and use the grab handles to lower and raise me on and off the raised toilet seat.

I can then go out forwards from the clockroom, mind you I have to be careful, the other day I got half way to the living room when I got stuck try as I might I couldnt move, I then realised I had closed the clockroom door with my skirt caught in the door jam, I couldn’t go back or forward, so I carefully stepped out of my skirt and continued to the front room and sat down in my undies. I then had to explain to my husband what had happened and asked him to rescue my skirt.
Do be careful what you leave behind, thank goodness we didn’t have visitors, because it would have been quite embarrassing.

Don’t get me started on access to upstairs and the need for a stair lift… but though it has taken a long long time we are almost there, any day now I expect a call saying when can we come to install, I’ve been looking forward to that day for months.

This is a very interesting site that takes about issues with how some people view people with disabilities… Good read http://www.nydailynews.com/life-style/artist-disney-princesses-disabilities-article-1.1593042

Oh well such is life! Anyway i just thought i would tell you little about my past… and some of the stuff that i went through on my journey to here, as some of the things I get upto daily. Bye for now.

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9th May 2015/130 Comments/by Amazon-lady

Multiple Sclerosis

Catheters – to pee or not to pee?

To pee or not to pee… That is the question! … Well I have had my Urethral (Indwelling) Catheter for 8 months now,. It has been changed twice as scheduled and three times extra because it has came out or has fallen out. I have had two UTI’s (urinary track infections) and two courses of antibiotics. The catheter should have only been in for a short time, while I recovered from my broken leg and ankle but as it has taken longer than expected, and my MS is progressing faster than i thought it is actually taking my leg longer to heal than a non M S sufferer.

I don’t know if the broken leg and ankel has anything to do with the length of time it’s taken, all I know is before my accedient my walking was a bit more stable, but has now deteriorated to the point of hardly being able to walk at all.

Anyway back to the Catheter, as I have had so many problems with it I am now seriously considering changing to have a Suprapubic Catheter fitted,for those that are not aware as to what that is,a whole that is surgically created with a connection between the urinary bladder and the skin then a thin tube (Catheter) is placed through the skin just above the pubic bone into the bladder, it does need carful looking after as it is a foreign body directly into your skin so cleanliness is essential, the area around the wound needs careful daily cleaning. I think this maybe the answer as at the moment I’am virtually prison in my own home as going out anywhere is a nightmare, the leg bags to attach to my existing Catheter are to say the least clumsy as you have to attach straps around the top and bottom of the bag around your leg and even with a skirt(you can’t wear trousers) the value pokes though, so I don’t use them unless I’m seating at home.

So can only go out locally and for a short time between having to empty my bladder. The suprapulic catherta may solve this I can attach a small bag and tuck it into my pants so I can wear what I want, that will make such a difference and give me back my confidence, so hope this can be done soon rather than later. It might also mean that at night when I get back up stairs and sleep in my bed with my husband I can replace the night bag and stand with a smaller bag tied round my stomach with a nice piece of ribbon .

I have found some interesting information at the following site http://www.nhs.uk/conditions/Urinary-catheterization/Pages/Introduction.aspx

Urinary catheterisation is a procedure used to drain the bladder and collect urine, through a flexible tube called a catheter.
Urinary catheters are usually inserted by doctors or nurses in hospital or the community.

They can either be inserted through the tube that carries urine out of the bladder (urethral catheter) or through a small opening made in your lower tummy (suprapubic catheter). The catheter usually remains in the bladder, allowing urine to flow through it and into a drainage bag.

Depending on the type of catheter you have and why it’s being used, the catheter may be removed after a few minutes, hours or days, or it may be needed for the long term. Urinary incontinence is the unintentional passing of urine. It is a common problem and is thought to affect millions of people worldwide.

It’s not clear exactly how many people are affected, but it’s estimated that between 3 and 6 million people in the UK may have some degree of urinary incontinence. Urinary incontinence affects both men and women, but it tends to be more common in women overall.

Anyway next thing to look forward too is the stair lift…

which after 8 months of waiting us due to be installed on Friday 15th May… i hope this is not the scene in my house when we finally get it installed. Can’t wait… I will be in the shower for hours, until my fingers go all wrinkly. Let you know how that goes, keep your finger crossed for me that nothing goes wrong. Bye for now.

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9th May 2015/3,051 Comments/by Amazon-lady

Multiple Sclerosis

Hydrotherapy helped me walk again

Hydrotherapy helped me walk again… I am now at the half way point… sesson three of my six weeks in the Hydrotherapy pool. I must say that I am getting quite use to it now and my husband and I are gradually fine tuning and mastering the process of getting changed and into the pool. I have found that getting changed into my costume at home is much easier, and wearing a dress rather than trousers makes the whole process much easier, then I transfers from my wheelchair to the hoist chair and get wheeled out ready to be attached to hoist to put me in the warm pool.

I no longer need help when I am in the water, which is great… i just carry on with the three or four other people in the pool and do the exercises that we have all been given. I did have to reduced some of the repetitions because on the second week I got a little too confident and over did things, I suffered for that and my legs wouldn’t work very well that week… so have slowed down and am taking things a little slower.

At this point i see a perfect opportunity to show off a little and brag about my achievements… I can now walk UNAIDED three or four times across the small pool! I am very proud of myself and it feels really amazing to be able to walk again… even though it is in the pool and the water is supporting me. My excise routine continues with squats and I use a float to press down under the water and raise it slowly back up… these exercises are all helping to strengthen my body core muscles. which is very important to all of us.

I have also added a link to the MS UK therapy centre which has some very useful information.
http://www.ms-uk.org/choicestherapycentres

Here is a little information I found that explains a bit about what our core is and how important it is to have good core strength…

The core is actually made up of three sheaths of muscles: The upper abs, the side muscles, which are called the obliques, and then this very deep layer of muscle. Those deep muscles are the ones that do all the good stuff, like support your spine and act as a natural corset.

The core consists of the abdominal muscles groups (transverse abdomens, internal obliques, external obliques, rectus abdomens), hip abductors/ adductors, hip flexors, the pelvic floor, and lumbar spine. In addition, it is lumbar spine that is primarily responsible for posture and stability providing the strength needed for stability.

Whenever a person moves, to lift something or simply to move from one position to another, the core region is tensed first. This tension is usually made unconsciously and in conjunction with a change in breathing pattern.

An example to try is to sit in a chair and to reach forward over a table to pick up a cup. This movement is first accompanied by a tension in the core region of the abdomen and can be felt by placing one hand on the abdomen as the movement is made. As the load increases the key muscles contract around the viscera, which are incompressible, to form a stable ball-like core region against which the forces are balanced in coordination with posture.

It is commonly believed that core stability is essential for the maintenance of an upright posture and especially for movements and lifts that require extra effort such as lifting a heavy weight from the ground to a table^.Without core stability the lower back is not supported from inside and can be injured by strain caused by the exercise^.It is also believed that insufficient core stability can result in lower back pain, poor posture and lethargy.

Lets get back to the pool… as I said there are normally 3 or 4 others at different levels and times in their course in the pool and we generally talk and encourage each other, the sessions are only 30 minutes but in that time we have found out each other’s names and why we are there and what we have wrong…

one lady had a bad car accident and is slowly recovering and has found the pool a great help. Another has back problems and the third lady the youngest of us is on the last of her 6 sessions and is going on holiday to Thailand next week so hopes to be swimming in the hotel pool as the hydro pool here has helped with her problem, can’t quit remember what she had wrong but wished her all the best and a good holiday she told me to keep on going as I had done so well. None of the others need the hoist though so I get it all to myself.

I’m always so surprised and thrilled that I can walk again, all be it in water, but it’s a great feeling. The time goes so quickly but I do recommend it. I don’t think you can just book on a course though, you do need your Physio to speak to the hydrotherapy dept to arrange a booking, but do ask if your Physio thinks it could help.

One tip I will offer is that to get maximum benefit out of the whole process you must not try to fight it, and not to over do things. you will feel very tired especially after your first session, it takes it out of you… I slept for 4 hours after my first session. Well it was the first time I had done any exercises in months accurately years if the truth was known, Since “Retiring from work due to ill-health” in October 2013, that’s a long time and then to get in the water and exercise after all that time… no wonder I was knocked out.

Anyway the positive is that each week is a little less trying but be prepared you might be very tired after your sessions so don’t plan a big afternoon out…just take it easy. All that said i do highly recommend it.

Until next time… hope you enjoyed this post about how hydrotherapy helped me walk again. Please feel free to make a comment, it is always great to get your feedback.

Please do add your email to receive notification of new posts, and please add a comment to the blog below. Thank you Amazon lady

9th May 2015/132 Comments/by Amazon-lady

Multiple Sclerosis

My very special friend

My very special Friend…I did have someone else who became a great friend to both my husband and I. She was the salt of the earth and nothing was too much for her, she loved life and made the most of everyday. I do miss her so very much, but sadly she died in 2012 before I was diagnosed. I wish she had been here when I finally found out what was wrong with me, it would have explained so many questions about why I was always so tried when we all went on holidays together, why I needed to sleep most afternoons, why so many things were not right…

Anyway we spent many happy times together. When our husbands went out playing golf we would pop round the shops for a bit of retail therapy, as you do! We would drink a lot and smoke a lot and moan about men a lot, and just do those things that girlfriends did together, i have lots of good memories of days spent together full of fun and laughter. I really do miss her company. We first meet when I needed a cleaner as I was finding it hard to keep the home clean while working full time. We soon developed a great friendship and became very close and shared a lot of things over the years.

She was diagnosed with breast cancer in 2000 and under went chemotherapy and radiotherapy, and when her hair started falling out she had a public event to raise money for cancer relief and she had her cousin (a hairdressers) shave her hair off in our local pub. She was so brave! and that act shows the kind of girl she was.

We were with her that day and I tried to go with her to most of the hospital appointment she had, and i know that if she had been here she would have come with me to all of mine. My son gave her a couple of his baseball caps to keep her head warm, but fortunatley her hair grew back quite quickly. She finially got the all clear in 2001/2 and we all had a massive party to celebrate.

life went on and she helped us out by keeping an eye on my mother in law when she moved in with us after my father in law died. little did we know that Mum was actually suffering with dementia and we eventually had to move her to a warden assisted bungalow not far from us, my dear friend carried on looking in on mum on a daily basis and we carried on paying her, don’t know what we would have done without her help. Mum had a fall and broke her hip, the doctors said that she would not survive an operation and a few days after her fall she sadly passed away. That was in 2012…

We carried on with great holidays abroad and fun times in our caravans in Europe and the UK, until one day when after several gallstones and stays in hospital they told her she had secondary cancer that had spread. She and her husband were told basically there was nothing there could do… we were all devastated but because she was the girl that she was we did not sit a mope…went away to a 5 star all inclusive holiday in Turkey and had a fantastic time. Her cousin was a travel agent and booked the holiday for us, she made sure we had special treatment, we were put into adjoining swim-up rooms and received VIP treatment all round which was fantastic and i will always cherish these memories of that last holiday with my special angel friend.

Sadly some months later she died in a local hospice with her husband and parents by her bed side. There were so many people at her funeral that they spilled outside onto the street. It just showed how many people loved and cared for her.
You touched everybody who came into contact with you, and you are sadly missed, goodby my angel friend… You will always be my very special friend.

2nd May 2015/120 Comments/by Amazon-lady

Multiple Sclerosis

HOW DOES IT FEEL

HOW DOES IT FEEL
I Thought I would get back to the symptoms of my MS and try and give some insight into what MS feels like, and some of the things sufferers have to deal with on day to day basis.

My balance is unfortunately shot to pieces…I can’t stand up straight on my own let along balance ( the days I use to be able to touch my toes are long gone)

My walking is laboured to say the least, I walk during the day with the help of my walker (Rollator) slowly to and from the clockroom a few times a day, trying hard to stand up to my full height of 6 feet 1 inch at the moment I maybe reach 4 foot something with an enormous bum sticking out (no idear who that belongs too, but I’m not taking ownership). I can walk outside the front door to the car and get into the front seat with help (haven’t quite worked out how to do that gracefully) and with help from my dear husband I can get out and transfer to my wheelchair the other end.

Dizziness only really effects me if I bend down from my chair or bed to pick something up, so try and use my grab stick if I remember. I can’t pick anything up from the floor if i am using my Rollator because if i did that i am pretty sure that I would end up in a heep on the floor.

I’m exhausted even though I’ve done nothing strenuous all day. All i have done is walked to the kitchen and back, did a couple of stretches holding on to the banister, used my leg lift ( it’s a length of nylon that’s used to lift your legs);I use it to lift my left leg up when I remember. I used the Tens machine on my muscles to try and get some strength back in that leg, so can’t say I’ve over done it, but my fatigue level is very high at the moment.

Evenings can be bad because often i am not able to get comfortable and my legs go into spasms, my feet feel freezing although they are warm to the touch. I also feel like i have little splinters of glass on the bottom of my feet ” but obviously I haven’t”. All in all some days just having a reasonable level of general comfort is quite difficult.
My kidneys are giving me grief today! I took a urine sample into the doctors yesterday so hopefully i will see if I have an infection; if so I expect another load of pills. Oh well, as long as I can clear up the pain. I am feeling quite depressed today don’t know why just sometimes it all gets to me.

I am on quite lot of medication but I think I might have mentioned that before but just incase, hear we go….
I also take some vitamins and minerals that were suggested. I also have high cholesterol and an under active thyroid just in case you were wondering. So far they haven’t found anything else, but give it time! If I could actually walk i am sure I would rattle.

Medication May 2015
My medication, doesage and what I take it for,

Atorvastatin 20 mg 1 x daily at night(Cholesterol lowering)
Baclofen 10 mg 1 x three times a day(Muscle relaxer)
Clonazepam 0.5 mg 2 x daily at night plus 1 extra if needed(Treat seizures)?
Duloxetine 60mg 1 x daily at night(Anti-depression)?
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 three times a day(Neuropathic pain)
Ranitidine 150 mg 1 x twice a day(Prevent stomach ulcers)
Solpadol 500/30 2 x four times a day(Pain relieve)?
Quinine Sulphate 200 mg 1 x daily at night(Leg cramps)

Evening Primrose Oil 500 mg 1 x daily
Omega 3 1000 mg 1 x daily
Vitamin B12 1 x daily
Vitamin D3 25 mg 1 x daily
Vitamin C 500mg plus 5mg Zinc 1 x daily
Vitamin D3 -2.5 mcg & Calcium -400mg+ Added Vitamin K1-30mcg 2 x chewable daily
Zinc 15mg + 80mg Vitamin C 1x daily

As hard as it might be you need to take notice of what you’re body is telling you, so if fatigue comes up to bit you take a moment to relax and take a nap if need be, nothing is that important that it can’t wait for a bit,believe me you will feel so much better for a break then you can go back to what you were doing refresh.

I found this information at: http://www.msmessenger.org/common-ms-symptoms-developed-ms-disease/

Multiple sclerosis is an unpredictable disease which can occur in any part of your life from 20 to 40 and with the aging the risk of developing MS disease gradually decreases. However the individual with MS symptoms may feel different from other patients, because it vary from patient to patient. For example in some patient disease would start with odd sensations and it would take years to progress but in some cases symptoms are gets worse more rapidly. Therefore MS is called individual disease because it shows different symptoms in almost every patient. It is also very important for one not to compare their MS symptoms & conditions with others as other patient might have worse situation of symptoms. Person with multiple sclerosis can have almost any neurological symptoms such as visual, motor, sensory problems.

So on a day to day bases I do what I can, I think I now know my limits and try to keep within them, I know I would fail an M.O.T and servicing wouldn’t help… so I make the best of what I have and try to add a bit of humour into each day helps, also writing this blog enables me to put down my thoughts and hopefully give others a smile… 🙂 And as a cartoon bunny said “That’s all folks”

Just one more thought…. Please feel free to comment on these posts, i really appreciate the feed back and not really sure if i have my settings for comments correct.

30th April 2015/124 Comments/by Amazon-lady

Multiple Sclerosis

Memory and Thinking

When I get things wrong or have problems with my Memory and Thinking… I blame “my Lesion moments”, I have two lesions on my brain and three on my spine. The spinal lesions I blame for my lack of movement, though I expect it has to do with my brain in someway telling it, or rather not telling it as the case maybe to do something, now here’s the sciences bit.

http://www.medicinenet.com/multiple_sclerosis_pictures_slideshow/article.htm

http://www.webmd.com/multiple-sclerosis/guide/multiple-sclerosis-related-thinking-problems

When you’ve got multiple sclerosis losing your keys or forgetting a name can be scary. You wonder whether the illness is clouding your thinking. It’s true that over time, about half of people with MS can have some cognitive problems. That means poor focus, slowed thinking, or a fuzzy memory.

Often these problems are mild and don’t really interrupt your daily life. It’s pretty rare to have severe thinking problems. They affect about 5% to 10% of people with MS.

Signs of Impaired Thinking in MS – The clues that you have fuzzy thinking due to MS are often subtle. You might not notice them until a friend, co-worker, or family member points them out. You may:

Struggle to find the right words to say
Forget things you need to do or tasks already done
Find it hard to plan or set priorities
Have trouble concentrating, especially when two things are happening at once

MS usually does not hurt your intelligence or long-term memory. It won’t change your ability to read or carry on a conversation.

Now you’ve read the science behind it…I can explain the way I deal with things I just blame any mistake whether it be using the wrong word, crying over nothing and quite a few other behaviours on my brain lesions. It has become a bit of a family joke. But I do worry as I’m sure many of you do whether this is going to get worse, and if it is when? I suppose the answer to that is “How longs a piece of string”. I do hope when I see my consultant at the end of the month and tell him that I think my symptoms seem to be progressing he doesn’t suggest another MRI, I had enough of those to last a life time during my diagnoses, the fact that I’m also very Claustrophobic certainly doesn’t help. But I wouldn’t be surprised if that’s what he suggests, or he might just say, well it’s not called Progressive Multiple Sclerosis for no reason, you will have to expect it to progress. There are no two people the same with MS it effects everyone differently. Hark at me telling you what the man will or will not say before I’ve even see him. Mind you better to be prepared for what he might say.

So far my memory doesn’t seem to have been effected too badly, mind you my husband would probably disagree. In my own defence I think we are both sometimes a bit forgetful, you know the scenario you go upstairs (not that I can at the moment, roll on the end of the month when I hopefully get my stair lift) and by the time you’ve got there you’ve forgotten what you went up for.

My husband does the shopping and we jointly compile the list in aisle order before he goes, but most weeks he either forgets to get something on the list or I forget to ask him to get something for me, think that is down to age and normal forgetfullness not lesions. Sometimes what does happen to me is i forget names, mainly someone in a film or TV program, I know the face but no matter how I try I can’t get the name, that’s were my iPad comes in very handy just tap in the film or TV show and hey presto the name comes up, oh yes we say I thought it was him or her when we would have gone on to another someone before the first person came to mind, is that age or lesions? maybe I’m to easy to blame the poor lesions. Anyway I hope that’s put your concerns to rest about what was I talking about, oh yes Memory & Thinking.

Hope you found this blog about memory and thinking interesting. Next time Fatigue… well that’s another thing all together… I will talk about that next time but for now I need a little nap…

24th April 2015/164 Comments/by Amazon-lady