Brain Power

One of the hardest things with any kind of chronic disease is the constant battle with your brain… Whilst you know that you have pretty much no control of MS; you know that the symptoms will progress and your body will gradually deteriorate… It is a constant battle to ward off the feelings of panic – fear and denial. Your whole body is screaming out…. WHY ME! Please let this be a bad dream that I will wake up from!

Although it seems quite simple and straightforward – reaching that point of acceptance is possibly the key to bringing some kind of peace back into your world. We are of cause fighting against a natural instinct to fight and never give up… From a very young age many of us are taught to fight and not give up hope… Well! reaching a point of acceptance is actually not giving up we just have to try and trick our brains into believing that “we are in control” – and if the universe is going to throw this shit at us… for what ever reason… we will accept that it is OUT OF OUR CONTROL and we will live our lives in the best most comfortable way possible … We will accept what ever shit your dreaded disease throws at us and we will do the best we can to survive.

It seems all a bit impossible but there is much research about the power of positive thinking and many scientists believe that much of our minds power is underutilised. I am not for a moment suggesting that anyone can beat MS or any other Chronic disease simply with positive thinking, but I believe that getting into a better state of mind could (Tricking our brains) and help us deal with the everyday issues and help ease the worry that all of us living with Chronic illness struggle with every day.

I searched the Internet for information about the power of positive thinking and came up with lots of clinical jargon … But then I found this.

I have actually never read this book but it is actually quite cute… Light hearted but with a good strong moral I thought it would be nice to share the link.

http://www.printmag.com/obsessions/watty-pipers-1930-the-little-engine-that-could/

I hope all who read this do not take offence or think that in any way I am suggesting that we can overcome our dreaded illnesses by simple positive thinking… Oh if only that were possible. All l am saying is that we all have a choice… we can either sit and cry at our misfortune or we can kick it in the teeth mentally and get on with our lives in the most positive way possible.

 

 

 

 

 

 

 

 

On that note I would like to take this opportunity to share this little MS Rhyme… If all else fails curl up in bed and sleep it off. 🙂

Good Night AL X

 

Three little things…

Three little things… a fresh start to every day

Sadly these days it is becoming increasingly more difficult to stay positive…when we listen to the news there is always a story that makes us feel less than happy about what is happening in the world…The bomb at the Ariana Grande concert in Manchester, the Knife attacks in London and countless other horrific events in the news. Many of us are genuinely worried about what is going on in the world, and because there is so much negativity around we often become focused on that negativity…I needed something to get my motivation back but nothing jumped out at me until now… There is a great deal of good and many many positives out there… we just need to look for them.
I have decided that I am going to focus on the positive and each and every post I publish from now on is going to feature three little things that I can be happy about.


Many of you already know that my blog posts have been few and far between of late…In fact they even came to a grinding halt for quite a while. I was attacked by a cyber bug and had to get a clever man to sort things out but after being off line for such a long time resulted in me loosing the momentum I previously had and sadly my posts came to an absolute stand still… I toyed with the idea of getting things back on track…and posted my Back on track post in April but since then my creative juices seemed to have all but dried up. However  when I took a look at my blog site the other day I was surprised to see that I have been receiving in excess of 2,000 comments each and every day and I have been very happy to see that a good 90% of the comments are positive people sending positive feedback and positive messages about my posts. Just another example of the positive stuff out there that I just needed to see it. This has been just what I needed to get me back on track so with this in mind I am going to start a new chapter in my MS battle. I am going to focus every day on something that I am grateful for, something that is positive and something good to send a sprinkle of hope to everyone. Each day I am going to see as a fresh start and each of my posts are going to feature three little things that make me happy… lets see what happens.


Cambridge scientist on the verge of curing Multiple Sclerosis

 

 

 

 

 

 

My second positive thing to share is an article I found on Face Book about and amazing woman Su Metcalfe who is said to be on the verge of finding a cure for MS..

I read this in the “Cambridge News” (and I quote) MS, an auto-immune condition which affects 2.3 million people around the world, attacks cells in the brain and the spinal cord, causing an array of physical and mental side effects including blindness and muscle weakness. At the moment there’s no cure, but Su and her company, LIFNano, hope to change that.

Su says she has discovered a small binary switch, controlled by a LIF, which regulates inside the immune cell itself. LIF is able to control the cell to ensure it doesn’t attack your own body but then releases the attack when needed. This article is well worth a read and you can find more info at http://www.cambridge-news.co.uk/business/technology/meet-cambridge-scientist-verge-curing-13129687

On the topic of comfort… Because of My MS I have limited mobility and this means that I spend a majority of my daytime hours sitting. It doesn’t really matter if your big or small just the simple fact that you can’t reposition yourself  when you feel uncomfortable especially when it’s hot you get sweaty in places that normally the air would circulate if you were walking around, sitting down all day it doesn’t allow the air to circulate and this means that I am more susceptible to pressure sores or skin irritations which can escalate and become infected if not attended to. My sister works as personal care nursing assistant in aged care in Australia and she recommended I try the Menalind Professional range which comes in a verity of creams or mouses. She said that she uses it with some of her bedridden residents and it was excellent, light weight and better than some of the heavier creams. I went on line and ordered some and so far I think is seems to be working. you can find more info here: https://www.hartmanndirect.co.uk/skin-care/menalind-skin-protection-foam

My nurse has also prescribed Medihoney barrier cream, which is excellent. The other thing that my sister recommended is a sheep skin chair rug which many of her residents also find helpful… The sheep skin is obviously natural so reduces the risk of irritation that may occur with synthetic products… It is also very comfortable and takes the pressure off my “Gluteus maximums”If you know what I mean. 🙂

These Three Little Things have made me happier today… and I hope that you reading about my positive experiences has sprinkled some positivity & happiness over your world too. Thats all for now, Thanks again for all your positive comments and for reading about my Three Little Things.

Bye for now AL X

 

 

 

How my Multiple Sclerosis is affecting me now today!

My day-to-day existence
Not a lot is different each day, it’s the same each week, the only way I know what day it is is when I take my first pill from my pill pot. My daily routine starts when my husband wakes up at 7.30am and goes into the wet room (thanks to the council for the disability grant to converting our bathroom into a wet room) anyway when my husband has finished he then starts by emptying my night bag(which is attached to my SPC which I disconnect) and empty’s for me, then raises the electric bed and helps me up and literally arm to arm pulls me up and helps me to my wheelchair, he then wheels me to the bathroom and again arm to arm pulls me up and put me on the toilet so I can clean my teeth, wash, use my Peristeen system and then self evacuate my bowls(which is not easy) wash and dry, and call my husband to get me back to the bedroom to dress. So after he recovers me from the bathroom and puts me on the bed he dresses me, from head to toe, he then puts me back on the wheelchair and takes me to the top of the stairs, we then have the scariest part transferring me from the wheelchair at the top of the stairs to the stair lift, he stands on the top stair and arm to arm pulls me up and twists me round and sits me on the stair lift, this is where I have fallen a few times… But thank God! not down the stairs. Husband puts wheelchair away round the side of the stairs and I go down stair on my stair lift. At the bottom Hubby transfers me arm by arm to my electric wheelchair which is parked at the bottom of the stair from the night before, I under my own stream get to my chair and Hubby once again transfers me to my electric chair where I sit for about 12-14 hours until I go to bed. So that’s my day unless I have a hospital appointment that seems the only reason I go out these days. From 10pm to 7.30-8am I’m in bed lying down.

I was diagnosed in July 2013 with Secondary Progressive Multiple Sclerosis; at the time I was working driving and holding down a responsible Customer Service Management position. By October of that year I retired due to ill Health, at which point my health did start to deteriorate fairly rapidly…to the point where I am today. I receive ESA and the highest level of PPI. I was recently scored 8.00 on the (EDSS) Disability Status Scale, which is pretty high 10.00 is classed as Death due to MS so only 2 to go.

Anyway what and how my MS affects me, from top to toes.

My brain is a bit fussy, I have more lesions now than first discovered but not prepared to have another MRI to confirm as I am also claustrophobic. This affects my short-term memory and my ability to string a sentence together. I also need my food cut into small size pieces to swallow, or they get stuck going down. So going out for a meal is embarrassing. I have Lesions on my Spine which effect my movements very frustrating. I need help dressing and undressing as well as everything else for that matter,but can still wash and shower if helped into the shower chair, I need drying though. I have what they call MS hug it’s when you can’t move and sit all day in a chair, you get a constant pain around you middle like its your in very thigh clothes around your middle. I have no muscle control in my bladder so now have a SPC Suprapubic Catheter and waiting for a Stoma to be fitted as my bowl has no working muscles either so having to use a (peristeen system) to flush my bowls everyday which is very difficult.

My legs are a bit useless can’t stand or walk for that matter, but they are always freezing. I take 30 tables a day plus 6 vitamins and minerals, drink 6 x 500ml water a day… pain is a big problem but I deal with it the best I can, fatigue is the other big problem I can sleep 3 to 4 hours a day.

Expanded Disability Status Scale (EDSS Scale from 0.0: – 10.0:

0.0: meaning: Normal Neurological Exam

10.0: meaning: Death due to MS

The clinical meaning of each possible result is the following

FS : Functional Systems (John F Kutzke defines functional systems as follows)

: pyramidal : cerebellar : brainstem : sensory

: bowel and bladder : visual : cerebral

: other

0.0: Normal Neurological Exam

1.0: No disability, minimal signs in 1 FS

1.5: No disability, minimal signs in more than 1 FS

2.0: Minimal disability in 1 FS

2.5: Mild disability in 1 or Minimal disability in 2 FS

3.0: Moderate disability in 1 FS or mild disability in 3 – 4 FS, though fully ambulatory

3.5: Fully ambulatory but with moderate disability in 1 FS and mild disability in 1 or 2 FS; or moderate disability in 2 FS; or mild disability in 5 FS

4.0: Fully ambulatory without aid, up and about 12hrs a day despite relatively severe disability. Able to walk without aid 500 meters

4.5: Fully ambulatory without aid, up and about much of day, able to work a full day, may otherwise have some limitations of full activity or require minimal assistance. Relatively severe disability Able to walk without aid 300 meters

5.0: Ambulatory without aid for about 200 meters. Disability impairs full daily activities

5.5: Ambulatory for 100 meters, disability precludes full daily activities

6.0: Intermittent or unilateral constant assistance (cane, crutch or brace) required to walk 100 meters with or without resting

6.5: Constant bilateral support (cane, crutch or braces) required to walk 20 meters without resting

7.0: Unable to walk beyond 5 meters even with aid, essentially restricted to wheelchair, wheels self, transfers alone; active in wheelchair about 12 hours a day

7.5: Unable to take more than a few steps, restricted to wheelchair, may need aid to transfer; wheels self, but may require motorized chair for full day’s activities

8.0: Essentially restricted to bed, chair, or wheelchair, but may be out of bed much of day; retains self care functions, generally effective use of arms

8.5: Essentially restricted to bed much of day, some effective use of arms, retains some self care functions

9.0: Helpless bed patient can communicate and eat

9.5: Unable to communicate effectively or eat/swallow

10.0: Death due to MS

My current situation is quite a lot like this MS take on a famous nursery rhyme. But what can one do other than get on with it. 🙁 All in all a little sad and sorry at this stage but… Trying to be positive. AL X

Back on track

Hi there … I am pleased to say that I am finally Back on Track…Due to an unfortunate hiccup with someone cyber bugs attacking my Blog, I have been off line for quite sometime now… However I employed the services of a very talented guy who helped to clean out the bugs and he set up my Amazon-Lady with a clean fresh, bug free new look. I hope you all like it, I am dearly hoping that my many loyal followers are still out there and still interested in visiting and commenting on Amazon-Lady.
Writing my regular posts has been a great distraction for me in the past and reading all the lovely comments helped me feel connected to the outside world, it also gave me a much needed boost on those days when I struggle with this dreaded MS. I wasn’t sure wether I had lost the plot,  but after being off line for such a long time my sister commented that I was sounding a little down and suggested that we try and get back on track. I believe that we have had a long enough break and we are now ready to do exactly that. I have regained control of my computer and there’s no stopping me now.

RIP Cyber Bugs… The pescy little critters have been eradicated and are now safley locked up in their cyber cell.
So please come back and read my news and let me know what you have all been doing too. Quite a lot has happened in the months that I have been unable to post blogs and now I am back on track and hope to get you all up-to-date with my news in the coming weeks….

Here we go… See you soon AL x

 

 

 

Fear After Falling…

Fear After Falling

This is an interesting topic that has made me think about the effects certain things have on us. For instance the Fear after fallingSometimes I see elderly people walking around with little steps, shuffling their feet as if they are scared to pick them up off the ground. Well maybe this is because they have had a fall and that experience has made them wary about protecting themselves from another fall. Unfortunately I have become a little like this after having experienced two falls recently.

It was just another normal Saturday and all seemed to be going well, so I thought I would have a shower, David helped me gingerly get out over the lip of the shower door, and helped me with my Zimmer frame to the bed to get dry and dressed, he then helped me to the dressing table where I dried my hair and put my makeup on, shouted out for him to help me to get to the stair lift, always that bit harder when I’ve had a shower as I have less coordination for some reason, this is when I’m always at risk of a fall. Well just before I sat on the stair lift I wanted to look at something in the spare room, so went past the stair lift much to David’s annoyance as he said he could do what ever it was that I wanted to be done. Well while we were arguing… guess what?  yes legs gave way and I fell backwards, flat on the floor banged my head and twisted my legs. David quickly went down stairs to get to Elk (Electric Lift Cushion) which once it’s positioned under me slowly lifts me to a sitting position to get up, but  for some reason it wasn’t working yet again. David had no way to get me up so made a call to a friend that lives down the road, Ian he and his wife came with us to Poland, he came straight round but even both of them couldn’t lift me I’m a dead weight so Ian called his son in-law David, he also lives locally luckily and came round, well they did get me up and on to the stair lift JUST. I thanked them and off they went to later meet David in the pub for a drink which was on him to thank them. I sat on my rise and recline chair and helped with the shopping list felling sorry for myself having to have two men as well as David lift me up.

Second fall

Oh yes I fell for a second time while on my own, David out shopping, what happen was I can’t be trusted to stay put, I needed to use the toilet so even though I was weak after the earlier fall it had to be done, so up I got and slowly walked the 12 steeps using my Rollator to the clock room, got there did what I needed too got up turned round to push the button for the flush and down I went, backwards again but this time very awkwardly, my left leg round the back of then loo and my right backwards on the Rollator wheel, which really really hurt, so there I was on my own not knowing what to do, how to get out of this on my own, of cause no mobile phone with me (David has always told me to take my mobile where ever I go) I spent two and a half hours getting out of the predicament I had got myself in and inch by inch dragged myself into the front room to get the phone to call my husband who by then was in the pub. So he came home with another two men, this time different men from the morning to get me on to the chair, after a good telling off he returned to the pub to finish their drinks and get another two to say another thank you. Oh well at least I am useful for getting the locals some free beers.

However joking aside… Since falling I feel frightened that the next time “and it will happen” I will break something, and that I couldn’t deal with again.  I can’t walk at the moment anyway and I need David to help me to and from the stair lift both top and bottom luckily we have two wheelchairs one upstairs and one down stairs, and just waiting my new electric indoor outdoor wheelchair that should arrive next week. looking forward to that…But in between times I feel very vulnerable and isolated I can’t do a lot apart from what I can do from my chair, which is really not much. I am reliant on David getting things for me and I hate having to keep asking him to get things for me. I hope that when my new electric wheelchair arrives I can at least get up and do a few more things for myself. But the falls have definitely taken it out of me.


Medication1

On a more positive note I have finally got some good news that may help my weight problem. Let me explain…On Friday I had my regular my 6 monthly appointment with my MS consultant, he gave me a good check up and spoke about my concerns about one of my tablets i has been taking, Pregabalin. As you may know I have been struggling for over a year now with my weight for some time know. Unfortunately since leaving work I have gradually put on close to 4 stone which even though people kindly say that I carry it well, my current weight is 125 kilos 19.7 stone which is way way too much. I can’t exercise so i just have reduce the calories I consume.  I don’t eat any carbohydrates or drink any alcohol, I only drink water and have over the last month started on the SlimFast shakes. I have seen the hospital dietitian for advice, but she has said that I am fighting a losing battle because the Pregabalin have a bad reputation for weight gain, so no matter what diet I’m on it won’t make a great deal of difference.

So I went away and did some research and found a tablet I felt could be the answer so I called my MS nurse, a month before I was due to meet with my consultant and ask her to speak to my consultant before my visit to see if he would allow me to change the Pregabalin for the new tablets Topamax ! (that way I would be able to at least have tried them out for a month before seeing him). He said that was fine and authorities the script which he emailed to my surgery to get sign off.   I had already been takeing the new tablet for a month and at the same time reduce the Pregabalin by the time I had my appointment without any problems, so what I wanted to ask was could I increase the Topamax up from the 50 mg he had prescribed to eventually 200 mg over 2 months. He agreed with me that in my case that was my best option. ( In the USA Topamax are predominantly used as a weight deductions tablet as well as a control for seizures), but he said I must be very careful as these are twice as strong as Pregabalin and I must gradually reduce one and replace with the other. He said that if I had the sense to find the replacement that I felt would suit me, I would be able to look after my own medication without too much intervention. He said he would be happy he see me in a years time but would be contactable if I needed to discuss anything with him directly. The nurse weight me and took my blood pressure 114/72 and pulse rate 57 to compare for next time and said that was very good (well at least got something right) and I kept a record for myself. So said goodbye and left to collect my prescription from the hospital pharmacy.

No side effects

Keep everything crossed this could be my lucky break and the final end to my weight battle…. Here comes the slimmer me.

That’s all for now.

AL

No stopping me now…

New wheels

Pronto M41 Modulite… coming to live with me.

Pronto M41 Modulite… coming to live with me. I’ve been looking for an electric wheelchair I can use indoors as well as out, it would need it fit into our car which has always been the problem as we have an old Rover estate not a specially adapted mobility car, so first I contacted the NHS wheelchair people and arranged for a home visit to survey our house(which is not a council house) I only say that because if we lived in a council house they would pay for any alterations that would need to be done to make it easier for a chair to get around the ground floor, when they did come out to see which chair would be suitable he said like most houses there were never built with wheelchairs or disabilities in mind, our doors are too narrow and the turning circles to access other rooms to thigh,so none of the wheelchairs they supply would suit my needs. He suggested enlarging the doorways, changing the front entrance as the front door way was too narrow so a pouch would be best, chopping a new doorway in our front room, well on and on he went of cause any alterations to make our house more accessible would have to be paid for by us, well we are not in a financial position to do that. So back to the drawing board as they say.

I have a lovely Red Wheelchair my dear mother brought me when she and my brother came for a visit from Australia last year, we use that all the time outside, and it fits in the car, but it doesn’t work around the house for the reasons I’ve explain above, or in the garden as we have a step down from the patio door and back door, plus the wheelchair doesn’t like grass neither does the Rollator, I only use that to get out of the house to the car and to and from the cloakroom, that’s as much as I can do, and as the name suggests my Progressive Multiple Sclerosis is progressing, so I do need an electric wheelchair to help me be more independent if nothing else. The other thing most people don’t think about is seating, I have a riser recliner chair in the front room, but there is no other seat I can use in the house, all are too low to get into and out of, that would be another reason for an electric wheelchair, where ever I go around the house I would take my own chair with me.

I have a great relationship with Paul at Essex Mobility Centre they supplied my Red Wheelchair, Electric Bed and Small Scooter, so went to Paul with my dilemma and asked his advice, he said he would look into it for me. Well within a couple of weeks Paul and his son Ben who also works for him arrived with a sample electric wheelchair that he thought would do the job.


The Electric Wheelchair he bought round was an Invacare Pronto M41 Modulite, all signing all dancing chair, take a look at the web site if you get a chance  http://www.invacare.co.uk 
Untitled

 

 

 

 

 

 

 

 

Here is a little bit of info about my new wheels: The Invacare Pronto M41 is a sleek and highly versatile indoor power wheelchair. It offers an excellent range of seating options to address complex postural needs providing support and comfort. A compact mid wheel drive base makes it easy to manoeuver in most environments and simple to transport. It is designed to perfectly suit an independent lifestyle – wherever you choose to be.


I tried it out… it has 6 wheels and the turning circle is incredible, went through our door ways and round the very tight corners, over all thresholds in through our conservatory over the door way and down the step into the garden, loves the grass so took a look around where I havent been for three years. My face said it all I was delighted with the chair it offered everything I wanted it even went through the front door, and with a set of ramps Ben had bought with him, showed my sceptical husband how it could be driven into the boot of his estate car, much to his dismay. All I wanted too know was how much and when could I get it, Paul said hold on I havent shown you all that this chair offers so he showed me a few of the extra functions, it reclines by 30% and with an adaptation would be able to raise by a scissor action up to kitchen cupboard hight and also would enable me to talk to anyone at face height, it also reduces in height to fit under a desk or table. A company called Motabilility supply and service the chair they do everything, not only service and supply any parts needed plus replacement batteries but also supply insurance, I’m sure there is probably more it can do maybe (make the beds and Hoover the house) but will have to read the manual, I can pay for this with the high mobility element of my PIP (personal independent payment) so for £140.24 per month for 5 years I can have it, hooray! Delivery is about two to three weeks, so look out world I’m coming.

I will write and tell you when it arrives and how I get on with it, that’s all for now take care Amazon lady.

Allergic reaction to something?

Allergies

Allergic to something? … Lets deal with the allergies first. This is not your common allergy to pollen or seeds; this is an allergy to something used in the operation theatre. On both occasions I had a Suprapubic Catheter inserted; within three days of the surgery I came out in blisters on my stomach, that subsequently burst (sorry if your eating), so I must be allergic to something they used during the time I was in the theatres. The first time was the 19/10/15. When I was home we were scrupulous with hygiene, cleaning the area with antiseptic wipes twice a day, morning and night, drying with sterile swabs and initially covering the wound with adhesive dressings. However despite all our efforts, two days later the blisters started and initially we thought it was something we were using, so we changed everything; different sterile cleansing wipes, we charged the adhesive dressings to melolin pads attached to my skin with medical grade tape. So in the morning when more blisters arrived we were both scratching our heads ” what the devil could it be”?  I called the district nurse and she arrived with a colleague, they both said they have never seen this before…  I had already contacted my supply of bladder equipment and they had sent a silicon-free catheter that arrived the next day, so was here when the nurses arrived, they decided to change the Suprapubic that had been inserted one week previous for the new one (big mistake I learned later). Unfortunately they could not get the new one in, so I was sent to A & E. That episode is in detail on a post I previously published; you can take a look later. That date was the 30/1/16 there I was fitted with a Indwelling catheter which I have had several times before.

So I was booked in for another operation, I explained to my consultant what had happened so he made sure the next catheter was silicon free, he said that the nurses should have know better, they should never have tried to replace a Suprapubic so soon after it was put in, it would never have had the time to heal and form a tube/tunnel to my bladder after the operation so it would have been impossible to replace it that way. The only way would I do this would be with another operations.

Allergies

So after under going the second operation on the 18/2/16 to insert another catheter, this time a silicone free one. I was sent home… but three days later the blisters came out again. This time I went back to my consultant who took the catheter out in his office, and said that there was no point leaving it in, he would send me to a dermatologist to find out what I was allergic too. There was no point going though that again until we find out what was causing the reaction. So again I wait till an appointment comes through to see someone, how long that will take God only knows.

Well believe it or not it wasn’t until the 20/5/16, some three months later that I received the letter and attended an appointment. I had to explain to the consultant all about my predicament so he knew what I was there for, anyway he had not heard of this but after eliminating a number of things that could be causing the reaction, he came up with the plastic sticky sheet they place over the stomach when they operate. Apparently this has started to come up as a problem recently, for the life of me I can’t find out what it’s called and cant remember what he said it was, anyway that’s what he thinks it is so they did a blood test and they said the results would be back within two weeks. In the mean time I would need me to come back for a further patch test to confirm there was nothing else that could possibly be causing a reaction. He also said that he did not think the urologist consultant would be too happy if the problem happened again, so he wanted to be completely sure he gets to the bottom of the problem.

My son gets married in August I wonder what the chances are that I will have this sorted and a new Suprapubic catheter inserted by then, probably more chance of flying to the moon, but let’s think positively.

Ps… Sorry about the spelling. Corrections have now been made.

 

Always check accessibility before you party…

Party Time

Going out to an event in a Wheelchair

We were invited to an event at the weekend, a friend had got married and we were on the list to attend a party to celebrate. The event was at a local pub/hotel and they said it was suitable for a wheelchair user, so I was looking forward to a night out and meeting people I hadn’t seen for years.

So what should I wear (always a problem never got anything to wear) I just had to buy something new! I wanted to look my best and I had no idea who would be there… That was my excuse and i am sticking to that. I saw a lovely multi coloured maxi dress and cream jacket on-line from long tall sally ( I  bought a lot from LTS when working, and they sell great stuff for tall women). I did however have a vast number of shoes to choose to choose from and high heals are no longer a problem in a wheelchair. I picked a fabulous blue pair from my collection that went nicely with the colours in my dress. So with my new outfit I put my makeup on carefully and made an extra effort with my hair, so now ready off we went. I ask my husband “did I look ok”? he said I looked lovely, but when I said does my bum look big in this dress? he said does it matter you’ll be in your wheelchair sitting on your bum so no body will see it. Ha ha…..

Shoes

The entrance had two doors to negotiate very close to each other, my husband had to physically lift me and the chair round a sharp corner to the second door, but got there in one piece, then through double doors to the venue, then oh my god what was of us but two very steep stone steeps to get up to the floor where the tables and chairs were set out for the party.

How the hell were we going to get up there, the hostess came to apologise saying they hadn’t through about those steps, there was no way we could get up them and no alternative, no other entrance no other way in, so and this is where I just wanted to die and go home without anyone noticing me, first two men tried then three came to physical lift me up the stairs, I have never felt so embarrassed in all my life.

I did enjoy meeting so many people I havent seen for years, and even though I have changed so much in those years people kept coming up to me to say hi. Half way through the night the next part I had been dreading going to find the disabled loo’s, these of cause we’re down the dreaded stone steeps again, my husband took me down backwards which was very hard on him and having to take the weight of me fully and the chair bounced on both steps the last being very high so my leg bars took the brunt of the bashing so did my heals. Anyway we got down, back to the entrance were the toilets are, but no disabled facilities I just had to try to get into the ladies, which once again had two doors, of which I could only get into the first and my husband had to stand by the door as it didn’t have a lock, luckily I always take an empty water bottle when we go out just for these occasions, hubby handed it to me and I had too emptied my catheter into it, screwed the top on securely and he put it back into the bag on the back of the chair, had to use my hand wipes and hand gel which luckily I also carry.

So now back to the party, back up those steps closed my eyes this time as the same three guys lifted me up, thanked them and made some joke that next time I would like four strapping men please, at which everyone laughed.I think if there is anything to learn from my experience is that always check if going to a function, restaurant even a pub that you can get into the premises and access the toilets without steep or stairs.

The problem is this country does have some fantastic old buildings but they are not accessible to disabled or wheelchair users, and they can’t adapted their premises, the government says as far as possible establishments should adapt where ever possible to conform with DDA (Disabled Discrimination Act). So check first that’s all I can say.

This was the first time since my diagnosis that I had gone out to an event like this, I knew there would be people there I hadn’t seen for years, mind you I didn’t realise how many, it seems people were coming from all directions to say hi. So as much as I didn’t want to be too conspicuous I was with the wheelchair in the air going up and down the stairs, lucky I’ve got a sence of humour and could make a joke of it all, when really I wanted to hide away.

At least I have a lot of comments about my outfit, especially my lovely blue high-heeled shoes, I may be disabled and in a wheelchair but my appearance is very important to me it always has been, and so many people said that, how as always I looked great. People I hadn’t seen for years came to chat it was fantastic, at times I did forget I was in a wheelchair, so for an evening at least I was back to who I use to be, the same as everybody.

ACCESSIBILTY

Hope you enjoyed hearing about my night out, do send me your comments and please pass on the web site details. That’s all till next time Amazon lady signing off.

Weekend in Kraków Poland

Weekend in Poland

The weekend in Kraków Poland  was great… The adventure started by us being picked up by a taxis at 5.30 am. our friends were already in the car, my Red Wheelchair slipped easily into the back and off we went. I was a bit stressed though tried not to show it as our friends were a little concerned as well as they are not experienced travelers, I because this would be the first time abroad since being diagnosed with MS, so was concerned how it would all go, starting with how I would be dealt with on the plan, but needn’t have worried, we went with Ryanair and I only give them a mention as the service I received was fantastic, we only had hand luggage so once booked in went straight through to customs, the chair obviously set off the metal detector, but the officer the other side checked me over with her wand and gave me a body search, she was very good and smiled which I’ve never seen a customs office smile before, so far so good, took the train to our boarding gate and was met by a man who escorted us to the desk giving our boarding passes, all four of us plus the escort got into a lift and down to the ground floor, our friends boarded a bus to take them to the plane, and we went on all I can describe as a (police bus with an outside lift) once next to the back door of the plane the (police bus) rose to the entrance and the door opened, a walk way was sent out so I could be pushed onto the plane in my chair,  I didn’t need their wheelchair as my husband helped me walk/waddled the few steps to the rear seats where our friend were already seated I was positioned in my seat, my wheelchair was taken out and placed in the hold. I was relieved it went better than I expected.

The flight was a bit uncomfortable as I’m 6 foot 1 inch and big with it so don’t travel well in confined spaces, airline seats were not made for someone my size, but the flight was only 1 hour 50 minutes so managed. The same thing happened at Kraków airport but in reverse once all the other passages disembarked.  A woman meet us and took us through customs and out to our waiting taxis. We had arranged for a taxis to collect us from the airport and take us to our hotel, which it did with no waiting or hanging about.

 Hotel

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Best Western Hotel (Old Town Kraków)

The hotel was central to the old town just a short walk or push in my case, the staff were very friendly and spoke excellent English, they couldn’t do enough for us, we had leant at least hello, please and thank you in Polish, which they appreciate, always think if you can a least say please and thank you in the language of the country you’re in shows you have tried. We had booked a room that was suitable for a wheelchair user, this was on the ground floor and had lots of space both in the room and the bathroom, with all I needed including a walking in shower with a seat, and raised toilet seat. The restaurant was easily assessable as was the outside area where we could sit, drink coffee and plan our days out.

So what to do first, we decided to get our bearing and headed for the city centre which was only a 5 minute walk from the hotel, so we were in a good position to explore our surroundings, the first thing we noticed was how clean and tidy the place was, but how uneven the pavements were ( be aware of that if you have trouble walking) but that aside when we arrived in the square which our taxis driver had told us was the biggest city square in Europe, we were not disappointed it was lovely as you can see by the picture at the top of this post, the architect was spectacular and the original city well 90% was not bomb during the war so goes back many centuries, the square had fantastic open white carriages with two white spotted horses (just like dalmatian dogs) bespoke with feathers and decorate harnesses and uniformed women at the front controlling them, beautiful sight, the area was surrounded with shops and outside cafe, we did spend most days there at sometime or another just people watching, shopping, drink and eating, well we were on holiday after all. The food was good and cheap the people spoke excellent English and were very friendly.

Hotel web site below…….

https://uk.hotels.com/ho225961/best-western-krakow-old-town-krakow-poland/

Salt mines

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Sunday to the Salt mines also with a guide and wheelchair access. The Salt mines where accessible at a stretch, to get into the lift that takes you down to the mines rather than descending several hundred and I do mean hundreds of steeps, most wheelchair will not fit into the lift you have to transfer to all I can say is a child’s wheelchair, but our friend folded my chair and took it down in their lift so I could transfer to my chair at the bottom, once again just be aware of that, but saying all that the discomfort was worth it just to see the spectacular sight.

 Auschwitz

Auschwitz 2

We have already organised two trips, the first was on Saturday to Auschwitz with a guide and wheelchair access.Unfortunately Auschwitz was not really suitable for disabled or wheelchair users  as the paths are incredibly stony and there are steeps to get into the huts, so even though we did tell them I was in a wheelchair and they told us it would be fine it wasn’t, so just be aware of that if you intend to pay a visit.

Even though it’s not suitable for disabled people to tour the site it’s incredibly atmosphere and I found it intense, very moving and if nothing else tells us we must never ever let anything like this happen again. Where I sat in my wheelchair while the others took the tour (which I insisted they did) I absorbed the atmosphere, looking at boards that showed photos with capitols as to where the photos were taken, something came over me, how can humans treat each other like that, I just can’t understand how one race can treat another’s in such a hiatus way, and how could one person control others to undertake such crimes against men, women and children. I found myself looking at the stony path thinking of those that had gone before, I wanted to pick up a small stone to take home as a memory of being here but I couldn’t it would feel like robbing a gravy, so I left the path as I found it well trodden with many memories, for those that don’t belive it ever happened just come and see then tell us it didn’t happen, God bless those that survived and those that passed.  

I think that it is impossible to find words however this plaque sends a very important message.

Auschwitz

I would certainly recommend a weekend break to Poland.

http://www.history.com/topics/world-war-ii/the-holocaust/pictures/holocaust-concentration-camps/main-entrance-gate-at-auschwitz

Thanks for reading this post, if you like what you have read please pass the URL on to your friends, and send me your comments.

Many thanks Amazon lady

Dark clouds have lifted.

Dark clouds have lifted

 

 

 

 

 

 

 

 

 

Hello everyone I’m back… Not only physical but mentally, and I am very pleased to tell you that The Dark clouds have lifted…. and finally the sun is shining again… As you will see the Blog is now up and running. Not only did I get attacked by a major bout of depression but to top it all off my Blog was attack by a Bot/Robot( those more au fait with computer terminology will understand). The blog has a new look I hope you like it and find it easier to use? If you want to send me a personal email just click the contact at the top of the page. Also don’t forget to send me any comments you have, and pass on the web site details to others.

I maybe didn’t need to write My previous post “Afraid & Alone”  but l felt that I needed to tell you about the good and bad. I also believe that it is important to be aware that days like that do come alone. The important thing is knowing how you deal with it.  I dealt with my dark cloud by writing down my feelings… I was not going to publish it but my sister read it and suggested that I should publish the post because depression is a very important subject that is often not discussed. So I decided to posts my thoughts on-line.

Believe it or not you do have control… even when you are at your lowest point and you feel that you have totally no control… you actually do. Your mind is a very powerful tool and you can trick your body into feeling better by pushing the negative thoughts away and tying to focus on the happy more positive things around you. Ok it is hard to do when you are feeling the lowest of low… But writing down your feelings can help to put things into perspective. It is also a good idea to speak to someone… friends, family your MS nurse or doctor, anyone that will listen to your feelings. Your MS nurse or doctor may prescribe anti-depression tablets until you get through the worst so don’t dismiss them, they can help even for a short period of time, anything that can help until your sunshine comes back like mine. I have added a few useful links below.

https://www.mssociety.org.uk/what-is-ms/signs-and-symptoms/mental-health/depression

http://www.depressionuk.org/useful_links.shtml

My husband has some great friends down at the local pub and they have all been collection vouchers that would get us to Poland Kraków for a weekend holiday. Crazy you may say… But the thought of a holiday, no matter how daunting the prospect of air travel in my current situation is… Having something to look forward to has helped me come out of my doom and gloom. something to plan and look forward to! A lovely couple we know have also said that they would like to come with us so that will be great.

that’s all for now… I hope you are all back on board with me.

All the best AL