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How are you coping with MS?

How are you coping with MS?

I wrote about MS in some detail last year, but wanted to go there again as a lot of you have read and commented on the post, so through an update was due.

MS is a complex and complicated condition, from Relapsed and Remittances Multiple Sclerosis (RRMS) Secondary Progressive Multiple Sclerosis (SPMS) Primary Progressive Multiple Sclerosis (PPMS) and all those in between. So as you can see the variety and verity is quite enormous, I personally have SPMS, but since I was first diagnosed in 2013 my Progression has speeded up quite rapidly, I have gone from working, walking, driving and for filling a useful role as a mother and wife, able to do many things that just had to be done, like house work, washing clothes, plus many others that I really enjoyed such as gardening and my passion cooking and baking, sadly none of which I now can do as my mobility has gone to pot and I’m not safe in the kitchen any longer.  so today I’m the old woman sitting in the chair and my dear husband at 63 has had to take over the household tasks, as well as caring for me.

I was interested to see on tv the other night I think it was a Panorama item were they showed that RRMS could be helped with stem cells, they treat a person with RRMS with a cancer drug chemotherapy which kills off the bad cells in the body, before killing off all their cells they take out some good cells and freeze them, until after a period of time when the body is able to have the good cells placed back in they body, defrosted of cause, they then grow and form new cells which repair slowly the lesions in the body. That is how I understand it, simplified I know but hopefully you get it. I realise it only helps people with RRMS so I’m not in the group of people who can be helped AT THE MOMENT but how fantastic that this is possible, if you haven’t seen this program yet try to get  a look on iPlayer.

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I thought I would give you an up date on the equipment I have at home to assist me, first the stair light that’s working well so no problems there, the only thing that worries me is even though the council paid for the stair lift and installation they don’t pay for the maintenance which is £600 a year, we obviously can’t afford that, so after the first year manufacturers guarantee which runs out in September don’t know what we will do if the thing goes wrong then, well we will just have to hope nothing goes wrong.

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I was so looking forward to getting the electric bed, when it arrived and was assembled it looked fabulous, two separate beds in one base so to anyone looked like a super king size bed the same as the bed we had before, we had to buy single sheets which I purchased I bought fitted sheets as I thought these would work better what with my bed able to change position i.e. head, middle and legs could be raised, but as it happens it would have been better to get flat sheets as each time I move my bed the sheet pings off the bed and my husbands sheet moves when my bed moves, well we had no idea had to try it out first so will try out our flat super King size bed sheet before we invest in new sheets, we still use our super King size duvet that works well, thank goodness we didn’t have to buy single duvet. The other worry is every time I move the bed make one hell of a noise like the slates are breaking, David has checked and the slats are still there no damage(at the moment) I’m just waiting for them to break, David said well if it breaks they will have to replace it, but the thought of the bed breaking during the night and me going through the slats doesn’t bear thinking about. Will have to call them and get someone round to investigate, I think the worry I have is that they will say I’m too heavy and didn’t tell the truth about how heavy I was when we orders the bed.

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These do need clean as you need to clean the toilet under the seat, very surprised how dirty the underneath of the seat gets, The only way I’ve found to clean and sanitizer it probably is to put it in the shower tray with a good amount of bleach and leave over night, my husband in the morning sprays the bleach off with the shower head, that cleans them really well, they do need drying with a towel but they come up really clean and smell much better, I can then clean the toilet from my wheelchair while the bleach does its job. The only down side I’ve found is the bleach seems to weaken the hook that sits on the front of the toilet stopping the seat slipping back on the toilet and it does squeak, not sure if it’s the plastic or metal, I expect it’s the plastic which looks as though it has a fine crack in it.

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My lovely red wheelchair I’ve named Zippy had a bit of a problem, I found it very difficult to turn corners when wheeling myself, David also noticed and said in his normal forthright way, (they will have to come and bloody fix that) which of cause they did. Great service came out the next day and fixed the problem, they didn’t even ask what the problem was, but my husband was there with the service guy, he does love a chat bless him. So that’s the latest so far, will keep you updates.

Lots more to tell you but think 1000 words is enough for this blog, keep well and sign up to my email by adding your email address, plus please do pass on the site details to friends and family, and add me to your social media accounts. All the best AL
P.S. Some have asked for my email: iamamazonlady@gmail.com

 

More MS Updates

More MS Updates.

Operation Date

Operation Date:

Letter received confirming 19th October at our local Private hospital, which will be paid for by the NHS, I was as surprised as the next man, lovely that I’m going into a private hospital, have also had my Urologist appointments at this hospital as well, I’m not complaining, I suppose it’s cost-effective as it keeps the NHS Hospitals lists down. Anyway I’m having a general anaesthetic  but hope to be in and out the same day, I don’t like staying in hospitals even a private one. I suppose it will depend where I’m on the list, if it’s early I should be in and out the same day.

New Bed

Electric bed:

Is now on order, mobility shop received a letter from the MS Society confirming the purchase order. Paul from Mobility came over Monday, we confirmed the height of bed(on height adjustable feet, 6 inches from the floor) headboard, I liked the padded one, but Paul suggest a flat one as my part of the bed is electric, he has found problems when the bed is raised it catches on the padded headboard, so we took his advice and went for the flat headboard, in a cream colour to match the surround of the base. We went for the firm mattress, the one we have now is a firm  orthopedic mattress. They have agreed to remove and dispose of our old bed, and install and demonstrate the new one. Delivery time has been quoted as two weeks, so hopefully will be in before my op, fingers crossed. All that’s left to do is buy a couple of single sheets and single mattress covers. ( will buy more to have a change of sheets later, when finance allows)

FLU SHOT

Flu Jab :

That is due soon will call the surgery to book myself in, the last thing I want to add to everything else is flu, especially as with all the medication I take I can’t then add cold and flu remedies, most of them contain paracetamol and most of my medication contains either paracetamol or a derivative of it. Be careful yourself if you get a cold or flu, check with your pharmacist before you take over the counter medications.

Sweat Rash

Sweat Rash:

In my groin is due to seating down most of the day, my district nurse has given me a tube of steroid cream that needs to be kept in the fridge, which in its self is a bit of a problem, as I keep forgetting to ask my husband to get it for me so I can apply it, I purchased a tube of Aloe Vera Gel as well, so will try that out during the day, and try to remember the steroid cream for the evening.(if I remember)I do use a feminine wash morning and evening, but it doesn’t help to clear the rash, need to remember to use the cream after I wash, I will have to get it clear before my op on the 19th October.

Weekend Away

Holiday:

We are going the last weekend in October, my husband has booked a lovely (have looked on-line, and has good reviews) hotel in Gloucester, there seems to be lots to do and places to visit. He’s booked a room suitable for a disabled person, and has checked all the access i.e. ability to get to the restaurant etc as we are going half board, don’t want to have to worry about trying to find somewhere to each at night. I will just need to make sure I take everything I need, especially as I will have had my op by then so need to make sure I am well prepared for any eventuality that might happen, it will be like taking a baby away, the paraphernalia that goes with a child, is now going with me.

Thats all for now hope you enjoyed reading More MS Updates.

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

 

 

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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Botox in your bladder… who knew?

Botiox

Botox injections in bladder.

Who knew Botox could be injected in your bladder “ouch”. Look at the following web page for full information http://www.windsorurology.co.uk apparently it not only works on wrinkles on your face but is effective in relaxing the bladder muscles, it reduces the need to visit the toilet as frequently as one did before. Well I have an appointment on Thursday to see my Urologist so he can check out my bladder, if the size is ok(what constitutes a normal size bladder I don’t know) anyway if it conforms to the right size I can then have these Botox injections that last between 6 to 9 months, I did ask him if he has the time could he just add a little extra Botox to the lines on my face, (whether he does I’ll wait and see)getting back to the bladder size if it’s not big enough then they either streak it by inflating a balloon via a catheter inside(no choice in colour) or have to  surgically increase the size (doesn’t bare think about that option) so all being well the first option sound more promising, so fingers crossed could alleviate the need for a Suprapubic catheter after all.


Ankle screw 

ankle bolt

Appointment made to see the surgeon that operated on my leg and ankle, he said I should return if I have any problems or if the screw in my ankle protruded more than the 3mm it had when I left the hospital, well my ankle has swollen and is very painful to walk on(not that I can walk very far )so appointment is the end of August, not as quick as I hoped but there you go, I suppose I will need an X-ray and stay in hospital to take the screw out, hope he can do it under a local anesthetic rather than a general as I don’t relish another stay in hospital again, I expect I will need to recover again which better not be as long as last time.


More blood tests

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Another appointment made this time at my Doctors surgery, I have been on Levothyroxine 50mg a day for an under active thyroid, and Atorvastatin 20mg a day for high cholesterol, since March and haven’t had a blood test to check my progress so thought it might be a good idea to see how I’m doing so that’s next week.


Physiotherapy Appointment today

Had my monthly Physiotherapy appointment this morning, normal chat told her that I have been unable to do some of the exercises she gave me last time, mainly the standing and leg stretching one, as with my ankle causing problems and my leg strength weakness progressing I have been concentrating on my core strength, she has reduced the leg and increased the arm and core exercises now for me. I was extremely disappointed with my weight loss as it has been a month since my last weigh in and I have religiously stuck to my diet but my weight has stayed the same, she tried to reassure me that I’m do everything right but am almost losing a battle as I have trouble moving and the tablet I’m on work against any effort to lose weight as they are known to put weight on, anyway she said she will make an appointment for me with the dietitian, she also gave as another walking frame as my husband bent the other one by standing on it trying to fit it to go between the stair rail upstairs and made it quite unsafe. Another appointment made for a months time.


Electric Bed

Think I told you I’ve been having major problems sleeping since I broke my leg and ankle, I slept on a hospital bed in our conservatory for 8 months before we had a stair lift installed to get me upstairs to our bedroom and our bed, but there in lies the problem I got use to being able to manover the bed into a position that was comfortable as it was electric, I could also raise the height so as to get up and out of the bed. Well cut a long story short my local MS Society have sent me a form that I completed and returned with two quotes and a letter from my consultant, and it looks as though they will fund it for me, keep your fingers crossed as that will be fantastic I crave a good nights sleep I’m sure that once I get a good nights rest, get the bladder sorted and my ankle dealt with the rest might fall into place, hopefully. So my thought for the day is never give up, keep trying every avenue you will find the help from somewhere.

Just thought you would new post  “Botox in your bladder… who knew?and updates on my daily M S diary, hope you enjoyed reading…All the best AL

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