Amazon-Lady celebrates 50th post

Amazon-Lady celebrates 50th post

50 posts Believe it or not we have reached 50 posts, I have come a long way and have written a lot about all sorts of things; some humours some informative so I hope all have been useful in some way or another.

I have enjoyed receiving and reading your comments, it made me realise I was right when I thought about writing this blog, I wanted to write it from a sufferer point of view and all I could find when I was diagnosed was medical information…useful but I couldn’t find anything that told me what to expect. I know it effects everyone differently, but why couldn’t I find something that I could relate too and I need helpful information about where to go to get this information. I spent hours on the net looking for contacts, hopefully the time I have spent has saved you some time.

We have come such a long way since April 2015 when we published the first post. What does MS 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 remember my sister and I giggling like too silly schoolgirls over the phone UK to Australia. We really needed a laugh because our family was still in a dark place grieving the loss of my dear Dad. Probably the first time in our lives we were building our relationship back as sisters and in turn creating my own personal blog. My sister sent an email today saying that she has made a BLOOK (blog – book) so that we have a hard copy of all the posts i have published up till now…50 as of today.

Anyway she said that as she read through the posts she noticed how flat I was when Amazon-Lady was first-born… she also commented on how much happier and how much more positive I am now in the recent posts…So this blog has really helped me and I know in myself I feel so much more connected, I have a direction and I am much more in control of my day-to-day feelings thanks to my lovely users ( 650 plus ) who take the time to read my weekly posts and send positive comments that help me start my days on a positive and focused note.

As of today I have received over 4000  positive comments… THANK YOU so much to all of you. I do read them all, but due to the volume of replies I am finding ti quite difficult to reply to all of you… so please accept my apologies you are all in my thoughts and even if i don’t get to reply to all of you remember that your feedback is much appreciated. If i did have the time to reply to everyone which i don’t… I would not be able to write anymore posts, and that I think is more important.

I still have a lot more to write about..but if any of you  have a subject that you would like me to write about … and it’s “clean” –  please let me know, send me any email at my address: iamamazonlady@gmail.com  Please don’t just put it in a comment, I will then try to do what I can, and if I can write about it I will.

So thanks again and let’s hope this blog can help others, let’s look to the next mile stone 50 more posts. All the best Amazon lady.

 Amazon-Lady celebrates 50th post

 

 

 

How my life has changed since being diagnosed.

How life has changedHow my life has changed since being diagnosed

I find it hard to believe that it was July 2013 that I was given the diagnosis that I have Secondary Progressive Multiple Sclerosis, that was just over two years ago, but it seems a life time ago, so much has changed for both my family and I, it’s hard to remember what I was actually like before I received the eventual diagnosis, although it was only a relatively short time ago. It’s like those videotapes that are sometimes used where a person is standing still, and everyone and every thing around them is rushing past at such a speed that the surrounding appears blurred…. That is how I feel when I try to look back and remember. I am still the same person but different, I know that seems a strange thing to say but it is true.

I was an adult then at 53 with a job responsibilities and a relatively normal life, but now I feel like I have stepped backwards in life and I feel like a child again. My MS means that I need almost everything done for me.
The hardest thing I have found since the day I was diagnosed back in 2013 is that things changed so fast… one day I had so-called normality and then the next my life became completely detached from any semblance of normality just like that in the blink of an eye. It was like falling off a cliff in slow motion, each day something else would happen to change me, not so noticeable that I or others would see, but when I look back at it now what a transformation, it’s like a child’s development in reverse.

Adult to child

  • A child learns to walk – I stopped walking
  • A child learns to come out of nappies – I have gone into them (well not quite but near enough)
  • A child learns to cut up his or her own food – I have to get someone to do that for me now.
  • A child learns to dress itself – I have to get my husband to dress and undress me.

I realise that my comments may sound quite negative and depressing, but I think that sometimes we all have to be honest and face the real world for what it really is (not always easy).
I never wanted to write or look at the world through rose-tinted glasses and because of that I think I owe it to people to tell it, as it is, “warts and all”. Yes of cause I have good days… but there are bad days too and I try very hard to the scales unbalanced and make more good day than bad.

Writing this blog has helped me more than I can say… and the comments I have received have lifted my spirits and helped motivated me, my users comments have become a very big part of my daily life. I have enjoyed telling people about many humorous events that I have encountered and I have managed to educated myself and passed on all sorts of useful information to other people relating to this debilitating disease… I hope i have helped someone out there.

Along my journey I have met some wonderfully supportive and professional people … Doctors, Consultants, Nurses, Physiotherapy, Neurologists, Urologist as well as many others, they have all helped me in one way or another. I have either acquired or purchased endless equipment … raised toilet seats, grab rails, perching stools, shower stool, walking frames, Rollator, grab sticks, stair lift, blue badge, wheelchairs, catheter’s (far too many) and electric bed and a raise and recycle chair, that’s a hell of a list… and I am sure I have missed out a few.  Anyway they all help me in some way or another to make my day easier or more comfortable.

I was only saying to my Husband the other day, thank goodness we have been to some wonderful places over the last 30 years. Some of the places we could obviously still visit, but we would need a lot more planning these days. However we have been very lucky to have had lots of long  weekend breaks over the years, mainly in March which is our anniversary and my husbands birthday , and again in October which is my birthday. We have traveled and explored cities for weekends and sometimes longer we have traveled to Europe, Rome, Florence, Paris, Bruges, Monte Carlo, Amsterdam, Germany, Ibiza, and further afield – Australia and have also visited most of the cities in the UK.

We  had some fabulous holidays in our tent and later in our caravan, with a couple that were close friends until she past away a few years ago from breast cancer. They also had a caravan, and while our husbands enjoyed fishing my friend and I would enjoy the sun, peace and quite plus a bottle or three of wine. Those days were so much fun, and I now have some lovely memories that I will forever cherish.

I do miss her so much… we were so very close and she was there by my side every step of the way until she passed away. We talked for hours and hours and researched many different avenues trying to put all the pieces together and come up with the answer for all the health issues I was having back then … we both had wondered if I may have had MS … well we were right! If only I could tell her that… it would be so very lovely to sit and chat with you again my dear friend I do miss you so very much.

Well I think that is enough of me feeling all sad and nostalgic for today. I do hope you enjoyed this post How my life has changed since being diagnosed.

Bye for now AL.

How my life has changed since being diagnosed.

 

 

Useful MS information

Useful MS information – Things you may or may not know about MS.

Usefull MS information


Sylvia Lawry
Who is she I hear you ask, well she is the lady we can thank for starting the MS Society’s around the world, she foundered the society in 1946. Read all about her at- http://www.slcmsr.net/en/about/sylvia-lawry.html

Did you know over 100,000 thousand people in the UK suffer from MS these figures I didn’t just pluck out of the sky, they came from the following website, read more http://www.mssociety.org.uk/what-is-ms Did you know more than 2.3 million people are affected by MS worldwide once again here is the web site where I got this information http://www.nationalmssociety.org/what-is-Ms/MS-FAQ-s

Did you know there are more than 90 organisations are affiliated to the MS International Federation globally, check out http://www.msis.org you can find a list of organisations around the world on this site. I have also located a pdf  that has maps of different parts of the world affected.   http://www.who.int/mental_health/neurology/Atlas_MS_WEB.pdf

They have not yet found a cause for MS however there are many theories, but nothing that can be substantiated. One thought is lack of vitamin ‘D’ which is the sunshine vitamin. I spent the first 10 years of my life in Africa, very near the equator so I would have thought that I had a good dose of vitamin ‘D’. The map from the above web site shows the further away from the equator you are, the more chance you have of MS… interesting.

Another thought is that it may be viral, like having chicken pox or glandular fever both of which I had as a child. Anyway have a look at the International MS Society web site http://www.msif.org/ and follow the links to “What is MS?” “Causes” and “Learn more”

I am sure it is just a matter of time before they do have an answer/ cure for MS and that is the same for many other disease, cancer for instance, researchers do seem to be closer to finding the answer to at least some types of cancer, and one day they will find a cure for this and all sorts of disease so until then its just a matter of time and until then I believe we just have to make the most of what we are given. We could be a lot worse off… there people all around the world fighting for their lives or unfortunate enough to live in a country at war, so I cannot and will not complain.

On a lighter note I took “Zippy” my new red wheelchair out last night, we went to a trivia night quiz at our local Pub. The pub has recently been taken over by two lovely ladies, before they arrived the place was going down hill rapidly and the village was very close to loosing its local. Luckily the new girls stepped in and rescued it, they have done a fantastic job and all the locals have come back to support them, it so nice to see people back in there that I haven’t seen for years, thank you ladies it’s so nice to have our local back. They are starting to serve food again and the new chef starts at the weekend, so we will try it out and report back. If the food is as good as the rest of the place it will be great.

Hope you have found the article informative, Useful MS information food for thought… until next time bye for now

AL

 

MS Updates!

MS Update!MS Updates! –  Just a little update about progress on my Ankle pin, Suprapubic catheter, Electric bed, Weight loss, Facial hair and possible Weekend away

Ankle Pin

ANKLE PIN : I have been to see a consultant about the pin in my ankle… the one that has been in there for a year now. By the way he is a different consultant than the one that I first saw who told me the reason I broke the leg and ankle was because I was too fat!
##**!!? this is polite code for : I don’t like you very much at all!!!

On a more positive note, My new guy is very pleasant and informative and took the time to explain the pros & cons of what I could expect if I had the screw removed; or if it is left well along. He said there is no guarantee that I would get any more movement or feeling in the ankle if the screw is removed. The reason for this being that my MS has more to do with the decrease in sensation and mobility… however he did promised to have his screw driver at the ready if at anytime in the future I decide I want to have the pin taken out. Much nicer man and we both had a good laugh… on that note we decided to leave the pin well alone and left him and his trusty screw driver for the next patient to consider.

Suprapubic CatheterSuprapubic Catheter: I called the Urologist office and asked his secretary if she could give me any idea when I could expect a date for the operation. I also asked her to update my records and told her that my cholesterol was down from 7.5 to 3.4 so I am no longer in the high category as indicated in the letter I received. I also have a general anesthetic a year ago when my leg and ankle was operated on and have lost 2 stone since that operation…even though I do need to loose more. I just wanted her to update the records to show that I am definitely trying to lose weight. It is a long and hard job because I cannot move very easily and can’t do any, exercises which is recommended when trying to lose weight.

She said that she would update my records and that it was just a matter of waiting to hear from the Anesthetic to book me in. It looks like the next available date will be 19th October, but she could not confirm anything but said she will send a letter when she hears. Second one-off the list… well at least the call to the secretary I can’t take it off the list completely until I have a date, but progress being made. Read more… http://www.amazon-lady.com/bladder-large-enough-for-a-Suprapubic-catheter/

 Electric Bed

 

Electric bed:  All letters and paperwork are with the MS Society waiting a decision…so nothing to report or discuss on this one yet.

Weight Loss

Weight loss: Two stone down… I have seen a Dietitian and she confirmed that I am doing all the right things. She also added that in some ways I’m fighting a losing battle because the medication I’m on is making it so much harder…She suggested I try to cut down on the portion sizes. I am on a no carbohydrate diet which she say is not really a good idea, she said I need to add some carbs even small amounts of brown rice or brown pasta, another appointment arrange for November.

Facial Hair

Facial hair: I recently purchase one of those well know and well advertised hair removal gadgets… I haven’t named it yet because I have only just started using it… so far does what it says but don’t know how long it will take to removal the hair and stop any re growth. I will let you know how it goes. Read more at: hppt://www.amazon-lady.com/facial-hair/

Weekend Away
Weekend away:
 
This one is a bit of a sore point… my husband is desperate to go away to a hotel somewhere in the country; one that doesn’t cost a lot and is wheelchair friendly. I, on the other hand would rather wait until I hear about the date for the operation. He says that if we wait till then it will be bloody cold and miserable weather and I can see his point but I don’t really want to go away until I get this catheter done.

The thought of going away and wearing this blasted leg bags, not being able to wear trousers in the colder weather doesn’t appeal to me at all and quite honestly I’m also not sure about going away…I know it’s silly but at least when I am at home I’m not self conscious… How can I explain? Here I get up and I know what I have to do to get ready, I know where everything is, I know I can eat breakfast, lunch and diner at my own pace, and if necessary it’s cut up before I get it… eating in front of others concerns me and going out for the day needing to empty my leg bag and being able to find a toilet, accessing shops, restaurants, café, also the added worry of fatigue hitting me in the afternoons, what to do after diner if we eat at the restaurant, going into the bar there and again needing the toilet.

I don’t know… I think it’s probably easier and cheaper to stay at home. No doubt there will be more to come on this subject, It may be an idea… not just for a break but also to do some research for the blog and I could report on accessibility etc which could be and interesting topic for a new post. In that respect it could be worth it so I will keep you posted, until next time…

Lesion-generated mistakes P S – Before  I go I would like to tell you about my recent run-in with my darling editor/sister… I have been scolded for being too eager and publishing my last post… Wheelchair access. I was home alone for the day because my hubby was out playing golf with a friend, I was feeling a little bored so decided to press the PUBLISH button to my post… however I broke strict protocol and the post had not been fully checked for “lesion-generated spelling mistakes”… Apologies go out to all my lovely users – I have now promised not to press the Publish button on future posts until  all “lesion-generated mistakes” have been checked by bossy boots editor. 🙂

Well there are a few things ticked off my list, I hope you enjoyed reading my MS Updates

All the best AL

 

 

Wheelchair access

Wheelchair Access

Wheelchair access…

Why oh why is it so difficult to go out in a wheelchair these days, and what is it with shops in particular that they don’t understand? People in wheelchairs do not all have carers to do everything for them… Even the ones that do have carers still like to be considered normal. We all need to shop, socialise and be out in the real world, and with only just a little more thought, from shopping centre developers/builders/ planners they could be made things a lot easier for those of us in a wheelchair.

I thought I would take Zippy (my new RED wheelchair) out, to see how I would get on pushing myself around, my aim was to test how difficult it might be to accompany my husband on the weekly food shopping trip.  And while we were out, we thought it might be nice to have a little look round. Off we went with high expectations,  hoping that i could participate in a regular everyday task of popping around the shops…  My hopes were starting to be dashed, when our first task was to find a parking spot. In short we found it very difficult to find a disabled parking spot, and we had to wait for someone to leave in their car; the person was clearly not disabled (who am i to judge)? but they didn’t display a blue badge on their windscreen. We both get so angry when people clearly break the law, parking in place not designated for them. I know it seems quite an insignificant whine, but it really is difficult when there are so few disable parking spots. The reason I and others with a disability need a larger parking bay, is I think fairly obvious, getting out of a car requires the door to be opened fully, and if you need to transfer to a wheelchair it is impossible if you are not in a larger parking bay, so please if you do not need a disabled parking space, and have a blue badge allowing you to use a disabled parking bay, please do not park in one.

I suggest all those who have a wheelchair , and require disabled parking print a few of these “Polite Notes” and have them at the ready, to place on the windscreen of any offending vehicle… Maybe together we can get the message across.

Polite Note

Well we parked and my husband got “Zippy”out and me in, off we went, and again the so-called wheelchair shopping trolley doesn’t fit my wheelchair, how the hell do they expect someone on they own to shop if in a wheelchair, when we managed to find an attendant to ask why, I could not use the trolley with my wheelchair, he said they are designed to fit the wheelchairs they supply.

How was a person disabled supposed to do that, if they need to use their own wheelchair to get to the shops, what do they do with their own wheelchair if they need to transfers to another wheelchair, how bloody silly.  So we went in separately, hubby with a trolley me wheeling myself, having trouble steering as can’t yet figure out how to turn a corner, but will get there in time, lucky it’s a Friday early afternoon, not too many shoppers around, but they are filling shelves with large storage cages in the way, having to manoeuvre around them, trying to watch out for other shoppers, I’m constantly apologising,  also end of each aisle stacked discount goods don’t help. By this time I’d had enough so cut my food shopping short, and waited outside for my husband to finish.

We thought after loading the car we’d have a look around, it’s quite amazing though how many places we just could not get into with a wheelchair, either the entrance was inaccessible or the shops aisles were not wide enough. We thought we would look for a coffee shop, but that was a problem too, the places we found I couldn’t get into, unless we wanted to sit outside, if they had that facility, but it was really cold so abandoned that effort, decided to go home for a drink.

So in conclusion going out in a wheelchair, you do need someone with you to help access places, it’s advisable to check first when and where your going, to check accessibility, take a look at another posts I have written, about doing or going anywhere “Spontaneously“if in a wheelchair, we have to think before we attempt to do anything, oh well saves frustration and disappointment.

Wheelchair access

 

Things you can’t do Spontaneously

Spontaneity

I was sitting here thinking about Things you can’t do Spontaneously if you are in a wheelchair… Ok lots of stuff is possible… if you give enough notice, and time to plan how to execute the task at hand. This is not a negative post… just a little bit of fun and my top 10 Things you can’t do Spontaneously if you are in a wheelchair.

1.TUBE TRAINS 

Tube Train

Most tube stations don’t have lifts http://www.tfl.gov.uk so it is fairly impossible to get around on the tub if you are in a wheel chair.
I heard a story the other day about a person that was going on a train with a person in a wheel chair… ok there was a lift… But believe it or not there were stairs up to the lift area???
Alternative:  Go train spotting (If that’s your thing,nothing against it but not my bag)

2. LONG TRAIN JOURNEYSLong train

long train journeys  can be exhausting and it is fairly difficult to get on and off without help or pre booking ( you need to contact your local train station, to check their accessibility and whether you need to book help in advance). Long train trips can be great fun, if you plan well in advance and make sure your well equipment, you can have fun, especially if you have friends with you, I would love to go on the “Orient  Express” but that is just a dream…the cost would be a little beyond my budget. (Oh well we all need to dream).

3. SWIMMING
Swimming

Going swimming without help or a hoist. (Check with your local council website, to find disability friendly swimming pools with hoists) Alternative:  Go to the cafeteria order coffee and the biggest cake you can, and watch others swimming, making fools of themselves.

4. GO TO THE CINEMA
Cinema

Going to the cinema can be a challenge unless you can park your wheelchair right at the front. (Check web site of your local cinema, for access) Alternative:  Hire a movie and watch it at home whilst stuffing yourself with popcorn…. lots cheaper.

5. GO TO THE BEACH
Beach
Going to the beach is not that easy unless you have a beach wheelchair which has ‘fat wheels’  you may be able to hire one.  (Check your local council, if they have beach wheelchair hiring in your area)

6. AIR TRAVEL
Air travel
if the disabled ‘quota‘ has been used up. Who knew they have a quota(Check your local airport website, look at the airline to see there disability facilities)
Or check out other airlines that fly to the destination you want, they may not have reached there disabled ‘quota’

7. GO SHOPPING
Retail Therapy
unless the shops have statutory ramps in place. Unless they are listed building, which means their status says they can’t fit them. (Check web site of your local council, or shopping centre to see they disability facilities.

Alternative: Try going to large indoor shopping centres, they are fairly new so most have disability access and lifts to different levels, but be careful you could spend a fortune.

8. DINNING OUT

Dinning out
Need to check ability to access the toilets, some restaurants have their toilets/cloakroom upstairs, downstairs or don’t have disabled toilets, so no access for wheelchair users.( Check web site of the eateries in your area, look at their accessibility).
My advice would be to take a note pad out with you, each time you pass a restaurant note if they look as though access would be possible, yes you won’t know by just looking at the outside if their toilets are accessible, but it might be worth a phone call when you get home, to ask the question, you will hopefully start collecting names of eateries that you can then visit.

9. VISITING FRIENDS HOUSES

Visiting Friends
unless they have wheelchair ramps. Most houses don’t have ramps, some even have steps or stairs to their front doors,(Might be worth buying a set of collapsible ramps) Well if you buy a pair of collapsible ramps, you can go to any of your friends. Or way not invite them to your home, that way you won’t have to worry about anything, apart from which wine to buy, and how much you might drink.

10. Go anywhere spontaneously (without planning and checking wheelchair accessibility)

Wheel chair
Alternative:  Think positive … life’s full of obstacles, so take a chance life would be boring if you didn’t.

Hope you enjoyed this post Things you can’t do Spontaneously a little light-hearted fun… but does make you think.

Till next time Amazon lady

 

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How MS affects my day

HOW MS AFFECTS MY DAY

To day I thought I would write a post about  how MS affects my day… It might make an interesting read to tell everyone what it takes to get me through the day, starting from first thing in the morning ; the help I need and get from my Husband and the tools and equipment I couldn’t do without.

First thing in the morning, my husband gets my walker (Zimmer frame) and I use the grab rail by my side of the bed, on the wall to pull myself to my feet, I need help to get to the Zimmer frame (my walker) and then I get into our on-suite, and either take a shower; with hubby’s help to get me in and sit on my shower chair.  Holding on to the grab rails wash my hair and body, he helps me out and he gets the chair out, while I stand and hold the grab rail. I  then very gingerly step over the lip of the shower base whilst holding on to him and then get out sit on chair and he helps me get dry, or on those days I don’t shower (it does take a lot out of me), I have a strip wash while siting on the toilet which has a seat raiser, and pull down grab rail, we are lucky that the sink is next to the toilet,  so I can reach the sink while sitting on the loo.

Once dry and with the walker and grab rail manage to get up, I get back to our bed, where my hubby picks some cloths and helps me to get dressed, I brush my hair and use the walker to get to the top of the stairs where I sit on the stair lift… I named him “Mario” because  after going round the corner of our stairs slowly, he speeds up on the straight, and then starts slowing down again at the bottom round the banisters to the ground.  Hubby gets my walker ready and I use the grab rail , and he helps me to my feet, I walk with the roller to my raise & recline chair where I sit and lower the chair, turn on the air cushion pull over my “over the chair table” and hubby brings my breakfast;. Normally I have a small bowl of muesli, coffee and water bottle to take my first load of tablets, 7 in all.

Daily Equipment

After breakfast I put my makeup on do my hair then I’m ready for the day. By then I’m exhausted but check my emails, and blog to see if I have to reply to anyone. I spend a couple of hours writing my next new post and I then email this to my Editor, who is my younger sister in Australia. She checks it out and adds her artistic flair in the form of diagrams, pictures or photos;  she has a back ground in graphic design and does a fantastic job, her input  bring my posts to life and she has a funny way of choosing exactly the right image to describe my feelings in a picture format. We are a great team really.

When she is happy with what she has done she then emails the post back to me and I check again that I’m happy… when we are happy that all is as good as possible  she presses the button and launches my post into cyberspace for you all to read…it’s a lot of work but so worth while, and by reading your lovely comments I believe you think so too.

I would like to take this opportunity to thank all of you who have sent me your comments. The blog has become such a big part of my life and I’m not sure what I would do without it.  I have been fortunate as recently a couple of International  MS Society have seen my blog, and have ask me to be a monthly guest writer, so that takes up a few more hours a month, many people seem to enjoy what I write, which has come as a great surprise to me, because most of my life I have been told that I was no good at writing.

I know my spelling has improved with the help of spell check, but my punctuation hasn’t, that certainly one of the important jobs my Editor does for me, adding punctuation to my articles… She (my Sister) explained this to me the other day –  she said that when I write I need to breath… and every time I take a breath I need to use some kind of punctuation 🙂 the vision of her reading my 700-900 word posts without a breathing spot made me laugh and I can just see her sitting there all red-faced  and gasping for breath after reading my posts with no punctuation :-). Anyway I think my writing has improved and my Husband says the more I write the better I get.

Thank you Darling, praise indeed coming from you.

Amazon Lady Global Meeting

About twice a week I call my sister and we catch up and have a good natter… the Amazon-Lady Global meeting. I also call my Mum on a weekly basis just to check how she’s going. As my regular readers would know all my family live in Australia. My mum has started line dancing classes and goes to the  gym three times a week plus daily walks, she also works once a week as a volunteer at her local library   at 78  she has a very healthy and active life style and I I’m very proud of her.

By the time I’ve done all that I need to empty my leg bag, so a trip to the loo is on the cards, so off I go with my Rollator, being careful not to fall,  and its normally lunch time by then and time for more tablets as the first lot have now worn off. Well that’s a typical morning for me. Time for lunch, what does the afternoon/evening hold? Hope you enjoyed reading about How MS affects my day.

Until next time… bye for now AL

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How to deal with changes in temperature.

How to deal with changes in temperatureHow to deal with changes in temperature. when you have MS.

What do you mean by that I hear you say… Well I’m talking about the great British summer time, one day and I do mean one day that’s how  changeable the weather is.  One day it is very hot …up to 30 degrees one moment and we have fans in each room; can’t sleep at night because it’s so humid and Im totally exhausted by the morning. I definitely need a shower which is an exhausting exercise when i have no energy to start the day, so after a shower i feel utterly drained.

Then in the same week I’m seating in the front room with a faux fur blanket round my legs and feet, plus a cardigan.  It’s freezing… well it’s cold and the temperature drops down to 15 degrees. that’s half it was only two days ago. Pouring with very heavy rain that floods the roads and makes everything look dull and dreary and very cold.  What’s happening to the weather? This was not in the brochure! I should write a complaint to the weather planners and express discontent and put in a request for a more accommodating temperature for those of us who have slightly faulty body temperature control.

Mind you don’t know why I’m so surprised about the weather, it happens every year…and it seems like the seasons are all wrong.
I do feel sorry for families with kids on their summer holidays, especially if they have gone somewhere in this country, poor sods it’s hard enough keeping children occupied at the best of times, but when it’s cold and raining it’s not only hard to know what to do with your day but it’s so expensive.

Anyway back to being feed up with this summer of ours… I can’t go out anywhere in the pouring rain,  if the weather was nice we could have taken “Zippy” ( my new Red wheelchair) to the seaside, go along the promenade and down the peir, but not going to get soaking wet just for the sake of it. I have put a web link from the MS Society that takes you to a fact sheet that is worth reading, the web site seems strange but it go straight to the site.

http://www.mssociety.org.uk/sites/default/files/Documents/Essentials/Hot-and-cold-temperature-factsheet-Feb-13.pdf

Anyway the weather outside has me confined to quarters so today I’m trying to figure out how to increase the flow of traffic to my blog site, it’s blowing my brain trying to understand SEO’s “search engine optimisers” – gosh i am starting to sound technical aren’t I ?
I know what they are but finding it hard to see how to get them to the top of Google search page, without spending any money (which I don’t have) I am bombarded with words like backlinks & RSS feeds, trying to get my head round them.
I have had some fantastic comments from you, and quite a few have said why are you not at the top of Google because some of you have problems trying to find me, so I am trying to suss it out.

I am on all of the social net works Facebook/Twitter/Pinterest/Tumblr/Shumbleupon/Reddit/Delicios & Flipboard… I don’t think there are any others I can be on.
If anyone can suggest something more I can do that doesn’t cost me anything please help.

Had to call the Doctors again this morning, the antibiotics I was given last Friday for another UTI  havnt worked, so they have got another prescription signed by the Doctor, for a different type of antibiotic, so will try that one, didn’t want to go through the Bank holiday weekend in pain, if this doesn’t work need to get another sample to them on Tuesday.

Still waiting a letter from my Urologigist with hopefully a date to have a Suprapubic catheter fitted, the last letter I received was to confirm he had seen me and was waiting to speak to the Anaesthetist to see if he was happy to give me a general anaesthetic. They have concerns as follows:

  • PMS
  • high cholesterol (didn’t check that one did he) no longer have high cholesterol it’s down from 7.5 to 3.4,
  • High BMI – I will give him that one,  but have lost nearly 2 stone in a year and I had a general last September when I broke my leg and ankle.

I still wouldn’t be surprised if either the Anaesthetist wants to see me, or because the Urologist said in his letter that he won’t do it until I have lost more weight, I don’t know if its just more red tape or the fact that they just don’t really know anything about me but I will go mad if that happens, can’t go on much longer with this tube between my legs, (sorry to be so crude) but it’s so uncomfortable.

Maybe just maybe the post will deliver a “very soggy” letter from my Urologigist with a date to operate in the not so distant furture. Just as I close this post the sun has finally come out so maybe that is good omen. I hope you enjoyed reading this post How to deal with changes in temperature.

Thank all folks, until next time. Amazon lady

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MS and brain lesions.

MS and brain lesions and how to get things done!

Reality hits home

I would like to start this post by discussing a few  points about how MS and brain lesions effect my every day life…I find that on a daily basis, when I talk to anyone I have to close my eyes and somehow that helps my brain search through my memory banks and it’s the only way I can remember what I’m trying to say.

With this in mind i would like to offer a small tip.
Get yourself an equipment diary/ Lesion Backup Book.

Memory book

Every time you get a piece of equipment or speak to someone about an item or service, take down their company name, their name and contact details, telephone number and email address. This might sound obvious but learn from my mistakes when you have a problem with something it can take hours and even in some cases days to find the right  person or persons to sort it out.What do I mean by that! Well i will explain a situation i recently had and then you will see how important it is to have a record of everything so that when your Brain Lesions let you down you will have a backup. ” That is if you can remember where it is”! 🙂

I have a riser recline chair which I couldn’t do with out…When i first received the chair it had an air cushion replacing the original seat, that is a great help because I sit on this chair some days for 14 hours. That is a lot of pressure on my behind… and the last thing I need to add to everything else is pressure sores.  Anyway  I called my OT people who originally organised the item but they said I would have to call the Council and speak to the Adult social care team. I called them and was told no I need to call the company that the OH asked to supply the items. So i got the number called them, but surprise surprise I need to call the manufacture of the item. So I called them, and guess what?  They will not do anything without a letter from the OT to ask them to visit me to sort the problem out. Apparently they need a paper work trail!!!  so back I went to the team and they don’t do that… so what the hell do I do now?

Very very frustrating….And I’m left sitting on a cushion that has no use at all, its like sitting on slats and  extremely uncomfortable. Added to the fact that my bed is also extremely uncomfortable and now my chair, I feel quite miserable and can not get any real comfort day or night because of the blasted paper trail and red tape.

Fortunately I received a call from someone it the OH department who said they would deal with it for me. I later got a call from the supplier saying they would be with me in the morning with a replacement cushion, why on earth couldn’t that have been sort out sooner?  Anyway better late than never.

The electric bed has come to a halt and i am still waiting a letter from my OH people to say the bed quoted would be suitable. And  as yet i have heard nothing so today i made yet another call to the OH department and had to leave a message, so have to wait for a reply. All the other paper work has been emailed over to the MS representative to send to the MS head office in London, I expect that  when they do finally get all the paperwork… it will still take ages.

Today I got a phone call from my OH, she asked if she could come over next Monday just to check before she writes a letter to confirm my need for an electric (profiling bed) are correct, she is happy to write a letter to say that is what I need, also this Friday the head district nurse is coming over to hand deliver a letter to say the same thing, so I hope with all this information the MS Society doesn’t turn me down for funding, so fingers crossed I hope to get a bed that allows me to sleep through the night.

The OH turned up on Monday afternoon with tape measure and clip board in hand, my husband took her to our bedroom to see the bed we have at the moment, when she came downstairs we talked about what I needed and what she thought I needed…We have a super king size bed at the moment (we have always had a bed that size) The bed only fits in one position in our bedroom. I sleep on the left side which is right next to the en-suite shower room, we have a grab rail on the wall which I can reach easily from the bed when I sit up, I can do that by swinging my legs round and over the edge to get in  a sitting position. I can then pull my self to my feet and my husband passes my walking frame round and I get onto my feet and into the en-suite. That works quite well for me but she was concerned that there was little room between the en-suite and the bed to use a wheelchair, we said that all the doors in the house are too small and a wheelchair can’t go through any door.

She then said that there was not enough room for a hoist so they would have to put a ceiling rail with a hoist, and because I am tall, that would be the best option. Her concerns are that carers need to be able to access both sides of the bed to turn me over.

I was holding back the tears as reality hit home hard as i listened to her words.  It is very hard to accept the reality that my MS may someday deteriorate  to the point that i need people to turn and lift me out of my own bed. I managed to say  well fortunately we don’t need that yet and please God we will never need that. But she kept on to the point where I could see my husband was about to be very rude.  I tried to finish the meeting by giving her all the contact details and quote from the Mobility shop who quoted us the bed and politely managed to get her to leave.

I have been quite depressed about the whole experience and said to my husband I can’t deal with things if I must have a hoist, that would be the final straw. I can’t stop thinking about it and I am getting more and more depressed about it. So let’s see what she puts in this letter, she said she would do it hopefully this week and email the final details to me… Meanwhile i wait and ponder and try to stay positive with the reality of my MS looming in the back of my head.

Will keep you updated, so until then. Over and out.

Amazon lady

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My New RED Wheelchair

Zippy

New RED wheelchair  –  When my Mum & Brother came over from Australia for a visit,  they wheeled me out and about to look round the village they live in some 27 years ago, my brother pushed me but commented on how difficult the wheelchair was to push around, it’s an NHS wheelchair which  is a one fits all” chair, however me being tall and larger than your average bear… I  don’t fit comfortably into the standard chair. Even though the service is excellent, I really needed a chair that is made for my personal needs and that would  cost a great deal which we couldnt afford so have to make do with what I have been given.

Unbeknown to me my Mum had wanted to buy me something that would be useful to me and make my day-to-day life a little easier.
My brother suggest that when we got back to the house and look on line to see if there was a dealer in the area that we could talk to about my needs.  Well! no sooner had we got home than we were off in the car to a near by mobility shop where we met Paul the owner, he was a delight and spoke with great knowledge about the type of wheelchair he thought would best suit my needs.

Much to my surprise my mum said she would pay for whatever he thought would be suitable and the chair he suggested was about £1000 the chair was perfect and the vision of having my very own custom made chair was a fairly tales dream that i never thought possible. But mum said  ” Just order the chair and send me the bill”, and if you need a deposit I will pay. I couldn’t believe my ears and was a little worried that it was going to be so expensive but no sooner had I gone out for a ride in the village with my Mum & Brother than I had a custom wheelchair ordered and the process of building my very own wheel chair was underway.

Paul said he would contact the supplier and get them to send the chair he suggested, he would then bring it out to me and take notes of the lenght of seat and the lenght of foot plates, height of handles, position of wheels, length of backrest ect ect, and that would then go back to the supply where a chair would be custom made in the colour I wanted and particular type of wheelchair, It all happened so quickly… i was so excited and one week later Paul came out with a sample chair to get all the relivant measurements. An email was sent to my Mum for a deposit, but Mum being Mum paid the whole  amount she did not want anything to delay the special gift she so wanted me to have. With measurements in hand my chair was ordered, the lead time was 2-3 weeks, and i couldn’t  wait, we also had extra brakes put on the back so when my husband wheels me around he can control the brakes….

Its here my lovely red wheelchair…Paul arrived from the company I brought it from delivered and set it up, lowered foot rests, raised arm rests and straighted back rest, it’s so easy to maneuver I was even able to propel myself in the lounge on carpet, and my husband was pleased as the handles. had been extended as requested and extra brakes were added so he could control the chair when he wheels me. The red is so me, the first time I go out in it I will have to wear my high heeled red shoes and paint my nails red to match.

I am so pleased with the company that has been so professional and helpful I will recommend them to anyone in Essex who want an  excellent products and top quality service. The  company name is Easy Mobility Services
email: sales@easymobilityea.co.uk web: www.easymobilityservices.co.uk if you do contact them just mention me the women with the red wheelchair , they are also helping with a quote for an electric bed, this quote is now with my local MS Society to see if funding is available, keep your fingers crossed for me. I’ll let you know what happens.

This morning I christened my new RED wheelchair “ZIPPY” I thought this name was particularly appropriate because I intent to zipp around from A to B, hopefully safety and of course in absolute style thanks to my new Zippy Red Wheelchair. Of course I will be able to wear my highest heel now…

red shoesI think theses will match quite well.

Thanks so much to my Mum. I really love it.  Thanks to my Brother for suggesting it  and of course to Paul. I feel very lucky to have Zippy … she will make the world of difference to my life.

And a  thank you for all my lovely readers for coming back and reading this post about my new red wheelchair. 

Keep safe AL

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