Part two – Supra pubic catheter update

cathter saga part 2 

Supra pubic catheter updated – Part two 

I meet with my consultant, new non latex catheters in hand ( well in the box) I had sent pictures to his secretary the day before, showing the state of my stomach, but unfortunately he had not seen them as he didn’t have a computer and the secretary couldn’t print them off. But never mind, I was there so I could show him in person. he asked a nurse to come in to his consulting office and when showed them the state my stomach was in… covered in open sores coursed by burst blisters they were both horrified.  He commented that he had never seen such a state and he had no idea what might have caused the blistering. He actually  knew that I had previously had a bad reaction to latex, so this time made sure he used a non latex catheter. So he didn’t see how it could be latex that had caused this. No answers again at this stage but he said he  would check with the suppliers to see what was in the catheter so we could element one thing at a time.

He said that the rash and blistering could be caused by anything from silicon (that was in the catheter he used) or the anesthetic used, the medical tape they applied, the gel/liquid to swab the area before the operation…. any number of things.  So the next step is to have an allergy test and that should point out what we need to avoid next time.

Allergy testing

Anyway he has left me with another indwelling catheter and has asked his secretary to send a letter to Addenbrooke’s hospital in Cambridge where they will do an allergy test to see what I’m allergic too. The following is taken from the web site: http://www.webmd.com › guide › skin-test

What Happens During a Skin Test?
The steps vary depending on what type of test you’re having. There are three main ways to get allergens to react with your skin.

Scratch test, also known as a puncture or prick test: First, your doctor or nurse will look at the skin on your forearm or back and clean it with alcohol. They’ll mark and label areas on your skin with a pen. Then they’ll place a drop of a potential allergen on each of those spots. Next, they’ll prick the outer layer of your skin to let the allergen in (It’s not a shot, and it won’t make you bleed.)

Intradermal test: After they look at and clean your skin, the doctor or nurse will inject a small amount of allergen just under your skin, similar to a tuberculosis test.

Patch test: Your doctor could put an allergen on a patch and then stick that on your arm or back.

Plan for an hour-long appointment. The pricking part of scratch and intradermal tests takes about 5 to 10 minutes. Then you’ll wait about 15 minutes to see how your skin reacts.

Patch tests take more time, and two visits to your doctor. You’ll have to wear a patch for about 48 hours in case you have a delayed reaction to the allergen.

Why the catheter change caused so many problems:

He said the reason the nurses could not replace the catheter into the hole was it had not been in long enough to form a channel, so it was never going to go back in, it should be left alone for three months to settle down, so he took it out and I will have to have it done again, after my stomach has cleared up which last time took three months. There is a lesson to be learned somewhere here, as yet not sure what accept  be prepared for anything, sometimes things don’t go as planned  no matter how much you want them too, I’m now left with the same indwelling catheter that I wanted to avoid by replacing with the Suprapubic. So I’m back to a 5-6 week turn around of catheter replacements.

Also found this site on the net which has some interesting stuff that may help other people with Catheter issues.

http://samadimd.com/prevention/what-you-need-to-know-about-catheter-infections

TIPS TO PREVENT A CATHETER-ASSOCIATED UTI

  • Wash your hands with soap and water before and after placing your hands on the catheter or drainage bag.
  • Clean around the catheter and the skin next to the catheter daily. Make sure to clean away from the catheter.
  • Do not keep catheter in for longer than necessary.
  • Make sure to empty the drainage bag at least.
  • Always keep the drainage bag below your waist to prevent urine from back flowing into the bladder.
  • Change the catheter at least once per month.
  • Drink water often throughout the day to keep urine flowing.
  • Avoid twisting or kinking the catheter. Move the tubing around if it isn’t draining.

That’s all folk till the next adventure.  Amazon lady

 

Supra pubic Catheter- Drama continues

Catheter Drama copySupra pubic catheter Drama Continues – In my last blog I told you about the saga of spending time in the A&E department of our local hospital. Finally home after the ordeal, with an Indwelling catheter… I wasn’t very happy as you can well imagine, apart from being in pain I was tired, fed up and hungry and all in all, pretty disappointed to have this indwelling thing back again. But that was just the start of another horrendous few weeks…

I called the secretary of my consultant and explained what had happened,  and she came back to me with another appointment to fit a new Supra pubic Catheter, but first I needed to go in on Friday afternoon for an MRSA swap which I did. On Monday at 12 midday was booked into my room and patiently waiting to see my consultant/surgeon, he arrived at 2.30 pm and explained that because no one had asked on the previous Friday to take a urine test… they had done one today and subsequently found that I had a urine infection! The end result being they could not operate ,so I was sent home with instructions to contact my doctor at the end of the week, by which time they would have found out which antibiotics to give me.

On Friday I did as I was asked and yes a prescription was waiting for me at our local chemist, I was to take a fairly high does of Trimethoprim (which fortunately I still am taking) until the operation which had been scheduled for the following Monday…On Monday the operation was done and I was sent home with a second hole in my stomach, next to the previous one. They explained that the reason for this secondary hole was that my bladder and bowel are very close together, so they had to close up the original hole and put in two disposable stitches…. (Which to date are still there).

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 Latex Allergy:  All was going well until the third day and I realised that blisters had started appearing on my stomach, bursting then bleeding. It was only then we remembered that I was allergic to latex, which is what the Catheter the hospital put in was made of. Surely they would have had that information on file somewhere????

I called the supplier and explained the situation so they sent two non-latex Catheters by courier to me that Friday. I called the district nurses and one came out that afternoon, (I can’t fault the speed at which everyone responded) the first nurse took out the old Catheter and put the new one in, which hurt like crazy. She could only put 1 ml of the 10 ml fluid injected in the balloon (a Catheter once inserted needs a balloon inflated to keep it in place). With the leg bag attached we waited and waited for urine to flow… but nothing, I tried drinking water but nothing… she tried flushing a sterile liquid into the tube hopefully it would return but again nothing! I was not going back to hospital again so we tried again with the second Catheter, but the same thing happen, absolutely nothing!!!

The nurse decided to call her supervisor who said that I should really go into hospital because they did not really know where that Catheter actually went…. The only other option was to leave it in place and see if by moving back down stairs on my stair lift and sitting in my chair and drinking a warm drink would help. Both nurses suspected that it could be a blood clot that was stopping the urine coming down. They left me with instructions to call out the night nurse team, if I did not see any urine come down into the bag, and they would come out and assess the situation again. This was now 6pm Friday night so had no chance of contacting anyone. What a complete balls up…

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 The drama continues: By 7pm… you guessed it still no urine! So I phoned the night nurses and explained the situation again but unfortunately they don’t have catheters, let along non-latex ones. By 8.30 pm two nurses arrived, one was the boss, she assessed the situation and I ended up with two Catheters, the original Supra pubic and an Indwelling, the senior nurse said if she took the Supra pubic out I would have to go through another operation again to put it back so it was better to leave it there and also put in an Indwelling Catheter. I was asked to contact the consultant’s secretary on Monday morning and get him to sort out the problem… He would be able to find the problem if he does an X-ray and then he can see exactly where the catheter has actually gone. Meanwhile I wait for the next part of the catheter drama to unfold… I originally thought I should hold off posting this until I see what happens next…. but decided to post now! Will keep you posted on my not so Supra pubic  Catheter…

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Bye for now AL.

 

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

 

MS Demons invade my days

 

How MS effected my day! … This is just one day in my life with MS.       Well firstly I make one hell of a mess, my MS really effected me this morning, I’ll tell you what happened  I was feeling very down and needed to do something…the dreaded black clouds were hovering overhead, so decided that some of my indoor plants need re-potting. Well you can just imagine can’t you?

Plants help me smile

Off we went to our local nursery… it’s always a joy to go there but the only problem it’s hard not to buy too much , it’s a bit like visiting the local pound and wanting to take all the strays home!

Any way my hubby had control and just wouldn’t stop when I asked or said oh look at that… “NO” he said sternly , potting compost and a new larger 10 inch pot is all you are buying today! And then added “You’ve got enough indoor plants to start your own nursery”. He also said “I like you in the wheelchair because you have to go where and when I say” (horrible sod)!  Anyway hate to say it but he’s right I’m terrible in a garden centre.  With hubbies help in restraining my plant purchasing frenzy  off we went to the cashier with potting compost hanging on my excellent hook purchased a while a go. It is on the bar at the back of the wheelchair and has proved to be very handy and on my lap in a wire basket with two pots, one plain brown plastic the other a lovely blackish brown ceramic pot.  Purchases made we headed  home.

Not today darling

Back home :

Safely back at home in my chair, hubby wiped the bag of compost and brought it to the lounge with a black bin liner to put on my table… ( In hind sight that was a mistake, should have done this outside). So with pots, plant, compost and small trowel in hand, I started filling the new pot up quarter full, then transferred the plant that needed re-potting  into said pot and continued back filling ( got all the words haven’t I, watch gardening programs on tv).
I finished and tapped the pot and sat back exhausted. Then oh dear as I looked down I realised what a big mess I had made…all that was needed was a handful of seeds to chuck on the carpet and things would grow… Maybe I could find a some money tree seeds and scatter them around the living room. What do you think? And does anyone know where to buy them?

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Somehow I had managed to spread as much compost on the floor as in the new pot (I though the pot was taking a lot of compost) not realising I think I was putting one trowel in the pot and the same amount on the carpet (oh dear how did that happen) called out sheepishly to hubby … darling I think I’ve made a mess. Oh God he said I only hoovered this room before we went out, sorry darling I said think I must have missed a bit, a bit he said, well he hoovered again and he put my new re-potted plant back where I could admire it, so the moral to this is story is get someone else to do the messy jobs, or alternatively do it out side.

MS Demons

 

So that was the start of the day, now my MS demons… what do you have  in store for the rest of my day?

 

Hope you enjoyed my post about MS Demons invade my days. That’s all for now AL

 

 

 

Why I spent the morning in A&E

Bloody Catheter image

Why I spent the morning in A&E
It started the night before, I was in the bathroom having a wash before bedtime, when taking off my leg bag to attach my night bag I noticed blood coming from my catheter, fortunately I was sitting on the toilet at the time so saved mess on the floor, but there was quite a lot of blood which concerned me, the blood stopped coming out of the catheter but there was a blockage so nothing could come out, there must have been a clot caused by the catheter going down the side of my bladder as I explained when it was changed last time.

Bloody CatheterThe only thing I could think of doing apart from calling the (out-of-hours nurses) which I didn’t want to do, so I had a to think!… How was I going to dislodge the clot that I could clearly see due to the fact I have a clear catheter.  I put some very hot water in the sink, soaked a small muslin cloth in the water, squeezed the water out and wrapped the catheter, I continue this a few times, then as I have a syringe that fitted, I tried that a couple of times, and managed to extract two clots of blood but couldn’t do anymore so went to bed with a couple of pads in my pants i plunged myself back into my night bag and kept my fingers crossed.

The night was a disaster… I didn’t sleep much at all and kept waking up all night. By the morning everything was a very wet right though to the mattress, I was so upset that at the age of 56 I didn’t think I would be wetting the bed, so as soon as I could I called the district nurse, luckily she was in the area and was with me in 15 minutes, she told me I should have called last night and got the out of hours nurse to come out… but anyway the catheter was due to be changed because it was 5 weeks since it was change last time. She tried everything but could not get the catheter out, she even called a colleague who said I should go to A&E because if the nurse pulled and it bled too much  it would be an emergency and I would have to go to A&E by ambulance so suggested that it would be best if i go in now… the nurse called ahead to let them know I was on my way.

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Well thank goodness we had already had breakfast because we had no idea how long we would be. We finally arrived at  the A&E and the receptionist was very nice and asked if we could take a seat and wait to be called… An hour and a half later my name was called out FINALLY …we were put in a cubicle and I was asked to put on a gown  and a nurse would come a see us. Another hour ticked by before the nurse came in to take my blood pressure and complete the usual forms, then the Doctor came in and managed to extract the catheter quit easily…I’m sure the gel the district nurse had put down the side of the catheter had helped, probably worked its way by the time we were seen.  I got dresses again; after the nurse put back my leg bag and off we went. After a very frustrating 4 hours in the hospital we finally got back home,  exhausted and upset after my ordeal but I was happy to have lunch a nice cup of coffee and some sleep… I  slept for about 4 hours with i desperatley needed. A waste of a complete day really… but worst was yet to come if you can believe it! I went to bed as normal looking forward to a non eventful night, but the was not to be, half way through the night wet again, stupid cow… I hadn’t turned the value on my catheter off so wet the other side of the bed. I was so embarrassed I couldn’t tell my husband and luckily I managed to grab another towel and tried to dry the area, but had to sleep in the wet until the morning.

Today my husband sprayed the mattress both sides with a mixture of white vinegar, washing up liquid and warm water, using a scrubbing bush he got the stain and smell out then he lent the mattress up against the radiator in the bathroom, I just hope it dries by tonight. Well it was dry enough to put back on the bed and make up with a water proof cover over the mattress this time, mattress cover and sheet, just in case, now hopefully a dry night.

Everything was fine for three days then on the third morning in the bathroom the catheter came out, and the balloon had deflated so I called the district nurse again, and guess what she couldn’t get a new catheter back in so here we go again, but this time I was NOT happy to go and sit in A&E department in the hospital with my legs crossed, so put a call out to my original doctor that installed the catheter. After all he was the one that said if it comes out or if I have any problems to call his secretary… so I did!  and surprise surprise she was away on holiday until next week.  So tried the main switch board for anyone else I could speak too, one of the consultants secretary’s she said she would try to get hold of my consultant and call me back, 4 hours later still waiting and called again, this time I left a voice message so now just waiting like a lemon getting up to the toilet as I can to avoid an accident. The Secretary finally called back and another consultant told me that I would just have to go to A&E. Great news… so with legs crossed off we went and waited another 3 hours to see someone. When I did eventually see a Doctor it was too late to re-insert the Suprapubic catheter,the only thing was to put a Indwelling catheter in and wait till my consultant came back from holiday. So home I went feed up and in pain but dry.

Well as you can imagine I am not a happy bunny at the moment… But I found a lovely cartoon that made me smile:

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What do you think? Should I send a copy to my Dr?…
Well that’s all from me and my Bloody Catheter bye for now AL.

 

How was your Christmas?

Happy new year to you all.

How was your Christmas? Did it all go well, were there any hiccups? Mine went really well, even without my family who live in Australia, anyway a good time was had by my husband and I,our son who is 26 and lives in London came to spend the week with was, which was great. Christmas Eve they wheeled me down to the local pub where I had a great time, even without drink (gave that up Christmas 2013) but didn’t need drink to enjoy the night. David and my son both behave themselves, didn’t drink too much, they were able to wheel me back home at a reasonable hour.

Christmas day arrived and because the boys had prepared the veg and Turkey and all the trimmings in advance, all they had to do was turn on the oven. I let them go down the pub on their own for the traditional Christmas Day pint. Food was delicious, we decided to eat a bit later than normal, so sat down at 4pm.

SPC(Suprapubic Catheter)

Now the update on my SPC (Suprapubic Catheter) I think I told you about the blisters I developed shortly after the operation, we started by changing the dressings and had a blood tests to confirm no infection, I changed the SPC for a non latex version, but after all these changes months later the blisters have cleared up all by themselves, so the conclusion was that it’s the self adhesive dressings, so now use melolin pads and surgical tape, which works well. I have now a different problem, when the nurse changed my SPC which just happened to be the non latex version, either the tube didn’t go down far enough into the bladder, or went to one side, the only way I can describe it if you look at the bladder as a small inflated balloon, and the SPC as a straw, it feels as if the straw has gone down one side on the balloon and not to the bottom straight, hope you understand what I’m trying to say, the effect of this means my bladder never feels completely empty, most of the time I feel that I need go to the toilet, so I’m constantly wet as I can’t get to the toilet quickly or easily, I will call the nurse to come out.

Stem Cell Treatment 

Stem cell

I was interested to see on TV Monday night a Panorama program were they showed that RRMS could be helped with stem cells treatment, they treat a person with RRMS with a cancer drug chemotherapy which kills of the bad cells in the body, then 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 that can be helped AT THE MOMENT but how fantastic that this is possible, if you haven’t seen this program yet that a look on iPlayer or follow the links at https://www.mssociety.org.uk/ms-news/2016/01/ms-treatment-feature-panorama

Little Giggle

Belly Button

(wish my tummy looked like the above)

Just to add a bit of a laugh, while my husband was changing my dressing this evening, I noticed a scar on my stomach and said is this one of those blisters healing, and he said silly cow that’s your belly button, oh I said silly me but I haven’t seen that for such a long while it’s not surprising I mistook it for something else, still it means I’m losing weight if I can see that now. Though you might like to have a little giggle at that!

Change in the weather

 

cold_weatherWe had suck great weather in December, record temperatures and Christmas I believe was the warmest Christmas Day on record. I am aware that a lot of people suffered from water damage when heavy rain caused flooding, I do hope this year will be better for those that were affected. But know the weather is the temperature it normally is at this time of the year (BLOODY COLD). Heating has been put up in this house, fur blanket (not real fur) and pashmina wrap on, but still cold, my extremities are freezing, that is due to my damaged nerve endings I suppose, well what ever the course I can’t change it now no matter what I do, and believe me I have tried everything other that putting my feet in a fire (which I don’t recommend) but that wouldn’t make any difference, so just have to do the best I can and live with it.

Looking forward

foreward

I think at this time of year to have something to look forward too a holiday is a good idea, we would love to visit my family in Australia but unfortunately that’s out of our reach, but a weekend in Europe is more in our price range, one of the country’s we haven’t been to is Poland, it’s only a couple of hours by plane and not too expensive. We will have to see if we can find a few pounds to put away each month to afford a weekend away. It would be the first time flying since my diagnosis and using a wheelchair, so will be a good trial to see how easy or not it would be to travel further a field, for instance to Australia, I realise the distance is not quite the same and we would probably need to travel business class if we did go to Australia for the leg room if nothing else, but at nearly £5000 a ticket unless we win the lottery that’s completely out of the question, my ESA and PIP don’t stretch that far.

I hope you enjoyed reading this post? Is so please do send the details to any friends or family, it would be nice to get to others that might enjoy the read.

Happy New year

All the best for now AL

“Christmas”-what does it mean to you?

Merry Christmas

“Christmas”-what does it mean to you?

Family and friends? That’s what makes a good Christmas for me. having family and friends around me, I’m sure you feel the same. I do realize if you are Christian this is an important time of year for you too. I’m afraid I am short of family this year, apart from my lovely husband and son the rest of my family are in Australia, cooking a prawn or two on the barbie no doubt, (put one on for me please guys…or maybe a few!).

Decorations

We started decorating the house at the weekend, well my husband did the decorating I just gave instructions from my chair, much to his annoyance as I told him where he needed to place to bubbles on the tree, he was getting to the point where he was about to tell me where he was going to stick the bubbles, so getting the hint I kept quite. So tree decorations and lights hung, Christmas candles up on fireplace, garland hung on the mirror, and we were done, well so my husband voiced his opinion that he was done and no more decorations would be placed in the front room. He did go out side and went up the ladder( which I told him not to do on his own, wait till our son comes home) but with his usual carefree attitude he ignored me and went up the ladder to hang the lights up on the gutter, God knows what would have happened if he had fallen, apart from my concern for him, how the hell would I get to him. But he won’t be told, oh well.

Tricks that make my life easier!

As I can’t either get up or light a candle which before MS I loved doing, making the house smell lovely with scented candles, I am now collecting(buying) flameless,  remote-controlled candles, though unfortunately they don’t smell I can at least have control over lighting them. As for the smell I buy reed diffusers and when they are done smelling nice I refill with my own home-made aromas, I make use of some aroma therapy oils I have, mix them with a Base liquid-I use water, Binder-I use 99% rubbing alcohol, you could use Vodka but I don’t have any so I use rubbing alcohol, you can get this from your chemist, I can then use my essential oils. I mix these in a jug adding 1/3 cup water, 2 teaspoons rubbing alcohol and 15-20 drops of essential oils, mix that up and half fill any small necked bottles, I use my old diffuser bottles, if you have any left you can always store in a glass bottle with a tight fitting lid,then find or buy reeds 5-6 per bottle will do I use the original reeds, now put reeds in bottle and there you are your own home made reed diffusers, just every few days turn reeds up side down to refresh the fragrance.

How MS is effecting me this Christmas

This is the third year since I was diagnosed,and the third Christmas I’ve spent with this condition, unfortunately I have noticed year on year I have progressively got worse, well I suppose that’s inevitable as the name suggests Progressive Multiple Sclerosis, but I still try to keep as positive as I can, even though I do get very frustrated as I was always very active especially at Christmas, not active in a physically athlete way I mean active in doing things such as shopping for presents and food, cooking, baking and decorating the house, wrapping presents and making sure everything is ready for the festivities, but now my mobility has deteriorated so much that I can’t stand or walk, all those jobs I’ve have had to pass to my husband, when I think back when I could do all these thing myself I do miss them,I would sometimes complain that I was doing it all by myself with no help, how I wish I could do those things now, I promise I wouldn’t complain again if I could (or would I, I’am sure I would still something to moan about) Anyway I try to do what I can, I have an over my chair table so I will be able to at least wrap presents, these I have bought on line, I now look forward to the post, white van man and any other parcel delivery person, sad women. I did make a comment to my husband last night,” I can’t believe I haven’t bought any of shoes in 3 years”, I was known as Imelda Marcos, though I didn’t have as many as she had, reportedly over 1,220 pairs, but you have now became obsessed with scarves he said, I think I must have bought a scarf a week, and I can’t secretly get them passed him anymore he see everything that comes in though the door, no longer can I say when he says “where did that come from” and I say that old thing I’ve had it ages. Ladies you know what I mean don’t you?

Flooding

How terrible the flooding has been, I send my thoughts to those effected, I can only imagine how awfully it must have been, and still as you clear up, it certainly puts any problems the rest of us have in to perspective, God bless and Happy Christmas I hope you have a better New year, hope you can get back to normal as soon as possible.

What did you think of this post?  please do send me your comments I always enjoy reading them, even if I can’t reply to each and everyone I really appreciate them. Who do you know that would enjoy this blog? Please pass the details on and do read any of the post you’ve missed at : www.amazon-lady.com

Have a very happy & healthy Christmas, and thank you for being part of my journey through life with MS, I hope and wish you health and happiness for this festival season. Amazon lady

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MS and some people’s attitude

MS and some people’s attitude.

I am constantly amazed at some people’s attitudes and even more surprised that many people still don’t understand the simple guidelines of wheelchair etiquette.


I was recently reminded of this when I read the following article on a  forum I belong to (which I can highly recommend) the MS Society http://www.community.mssociety.org.uk
Thank you to Steve who gave his permission for me to use his words. This I think is an example of some of the ridicules things we hear people say, if only they could think before they speak.

What did she think I was going to do?”

WHEELCHAIR

One of the benefits of having a good robust mobility vehicle is that I am able to attend the occasional community event where the road is closed to traffic and I’m free to mill about amongst the throngs of people. Our Daughter loves it when daddy can come along (she gets a ride) and we can operate as a little family. Last night was the turning on of the Christmas lights in our Town. What a surprise when a young fresh-faced police community support officer came leaping over imploring me to stop.” This is pedestrians only,” she bellowed. “I’m a pedestrian,” I replied. “But you’re on a road vehicle.” It was quite tedious having to explain my entitlements to an officer of the law. Anyway, she was really quite patronizing in the end: “Oh promise me you’ll be really careful sweetheart,” soft-voiced, hand on shoulder.” What was I to say in return?” Yes this a turbo-charged quad in disguise and I’m going to mow everyone down.”

I just thought I’d share that precious little moment with you. No police community support officers were harmed in the incident. I was quite forgiving…


When people approach someone in a wheelchair with a carer, why do they talk over you, as though you weren’t there, or speak in a patronising way as if you were either deaf or a child, maybe it should start from childhood, be taught in schools why people are in wheelchairs, and how to speak to us, we are still people after all. If you speak to someone in a wheelchair, direct your conversation down to them, look into their eyes not over the top of their head, you don’t have to go down on one knee as if proposing, just talk to them.

If pushing someone round in a wheelchair in a shop (that is accessible of cause) make sure you stop were the person what’s to look, don’t wheel passed so you can look not them. Maybe a silly thing but it has happened many times to me, for an example my husband took me to Sainsbury’s (other supermarkets are available) we were looking for lemons, so we found them and my husband asked are these all right? To which I replied I have no idea I don’t know what you are looking at you’ve pushed me passed them. So those that kindly help us, please just be aware of the person you are with…

And on that note I think it is appropriate to add the following list of simple point to remember about Wheelchair etiquette

Show respect

How to Approach People in Wheelchairs

  • Ignore the wheelchair
  • Be friendly
  • Greet them, introduce yourself and shake their hand
  • Treat them as you do everyone else
  • Talk to them as you would anyone
  • Speak directly to the wheelchair user
  • Sit down at their eye level if possible
  • Do not grab or touch the wheelchair unless asked by the user
  • Don’t have a sad look on your face because you feel bad for them

When You Should Offer Assistance

  • Offer assistance only if the person needs it
  • Ask what specific way the wheelchair user needs you to help
  • Don’t assume every wheelchair user needs help
  • Offer assistance if you see the user struggling to attempt a task
  • Always wait for the wheelchair user to accept your assistance verbally by offering a yes or no answer

Don’t forget as a wheelchair user you have rights, such as on public transport. Below has been taken from the Citizen Advice look at the web site: https://www.citizensadvice.org.uk

Traveling by Bus or Coach


“Buses or coaches may need to meet the Public Service Vehicle Accessibility Regulations 2000 allowing access to the vehicle for disabled passengers. Whether the vehicle has to meet the regulations depends on its age and purpose. In general, vehicles must meet the regulations if they carry more than 22 passengers and were bought into service from 2000 onwards.”

Traveling by Train 

Under Rail vehicle accessibility regulations disabled people have rights when traveling by train. Disabled people should be able to:  getting on and off trains in safety and without unreasonable difficulty and do so in a wheelchair travel in safety and reasonable comfort and do so while in a wheelchair.

So we do have rights…it just a matter of knowing your right so stand up (Metaphorically speaking of cause) for your rights.

All the best AL.

 

MS Secondary Conditions

MS Secondary Conditions

MS Secondary conditions

There are secondary conditions that can be attributed to Multiple Sclerosis; you could have some or none of these extra conditions… But please do not be concerned that you will develop these, it is just worth knowing about them if nothing else.

Noise Sensitivity 

Noise sensitivity

Noise Sensitivity scientific name Myoclonus, are you like me easily startled by noise? Any noise it seems… door shutting, even opening believe it or not…I am constantly jumping out of my skin. If kitchen doors or draws closing, I can even hear when in a different room…and God if someone drops and smashes something I’m besides myself, sometimes it drives me to tears with fright. I can hear some of you say “how ridiculous”, but believe me if you do suffer from this your nerves are constantly on edge. Read what the experts say http://multiplesclerosis.net/living-with-ms/myoclonus-why-am-i-so-easily-startled-by-sound/

Optical Neuritis 

Light Sensitivity

This is another symptom that you may have, or not but I have “Light flashes” something which can be a bit disconcerting, sometimes it looks as those the lights are either flicking, or a bulb is about to go out, but of cause no one else sees it, I’ve given up asking “did anyone else see  that”, but take a look at another site. https://www.mssociety.org.uk

Stress & Anxiety

Stress

I think most of us at sometime or another can or have suffered from Stress & Anxiety, you don’t even need to be suffering from MS, but I think this is something we all should be aware of, it can creep up on us at the most unexpected times, and can disappear just as quickly as it appears. But please if this becomes more than just a passing blip seek advice, there’s a lot of help out they, just speak to someone.   This web site helps and tell you more than:   https://www.mssociety.org.uk

Osteoporosis

Osteo

This is though to be causes by Vitamin D insufficiency, which in its natural state is only found in sunlight, Vitamin D is not found in any foods, just sunshine and supplements. Osteoporosis is a weakness          of the bones so fractures are a concern, be aware of that if you are worried it’s worth talking to your Doctor. Read the science : http://www.nationalmssociety.org/Resources-Support/Living-with-Advanced-MS/Osteoporosis

Hyperlipidemia

HDL(Good) Cholesterol full name: High-Density Lipoprotein, these are good they help remove excess Cholesterol from the bloodstream, but the one we need to watch is LDL(Bad) Cholesterol full name: Low-Density Lipoprotein, this is the Cholesterol that can build up in our arteries, so blood doesn’t flow well. If the LDL builds up too high then we are more prone to heart problems and possible strokes, unless you have a blood test you don’t know what level your Cholesterol is, so get a test. Read website… http://heartuk.org.uk/health-and-high-cholesterol

Please don’t have sleepless nights about the above, I just thought it was a subject that needed to be explained, some of you may encounter these some of you may never encounter them, but if you are not aware you can’t be in control of your own body, you need to know what these things are and how they may affect you, and what you can do about it, anyway enough from me for now.

Please do send me your thoughts on a comment, I would like to know what you think of this post, as well as others, do keep in touch, and please pass on the web address to others.

Amazon lady—–www.amazon-lady.com

 

MS when it invades your world

MS invades my world“Today is just another day” Just another day when MS when it invades your world… sure someone said that! or something like that, well today  I woke from my lovely comfortable electric bed (sorry for those that don’t have one but I would definitely recommend it). The morning routine started with the normal stuff… unplugged myself from my night bag, David my husband emptied it for me bless him, checked stomach area around catheter first, that’s doing ok a wipe with an antiseptic wipe, the rest of the area looks as though someone has stubbed out cigarettes on my stomach (slight exaggeration) but can’t think of another way to describe it.

Hair Colour

Decided to colour my hair this morning, I’m always trying to change something or another, since MS invaded my life I have had to find ways to do things myself,  so colouring my hair while in a wheelchair is a bit of a mission. So got out of bed and with my Zimmer frame found my way to the dressing table, I’m afraid I had to do my hair without anything on, as once the colour had taken which takes at least an hour, I was going to the shower, shampoo the colour off and wash, with David’s help of cause, which is so much easier than having to take off clothes over my head with bleach on my hair.

While the colour was doing its thing thought I would turn round on my chair and wheel myself to the pine blanket box at the bottom of our bed, I needed to sort out my catheter bits and pieces that we store there, need to take out items no longer needed, I will be given these to the nurse that it coming next week, to change my catheter for a female one replacing the very long male one that the hospital put in.

Catheter Equipment

Had a box delivered this week, has all the new catheters and bags that I now get from another supplier, I’ve spoken about in previous blogs, Manfred Sauer UK Ltd http://www.manfredsauer.com they are so helpful, they sent samples of different bags so I could try, the guy I spoke to is Phil he is incredibly knowable, talked me through what would be suitable and then even called to see how I got on, that’s what I call customer service, I would definitely recommend you call them and ask for Phil,  if you have any concerns or problems.

I choice the 600 ml hip bags which I actually uses as tummy bags,                  I double up the straps they supply to go around my stomach, these       have a plastic zigzag effect on the back of the straps which make it very comfortable, they have extra Velcro on the front that fits to the bag, I tuck the bag under my pants so I can now wear trousers, which I haven’t been able to do with a leg bag, so I’m much happier and I don’t even realise I’m wearing a bag, until I need to empty it of cause.

Sorting equipment

Back to where I was sorting out the blanket box, took out some things and put in a carrier bag to give to the nurse, and replaced with the new equipment that’s that sorted. Now for my shower, David helped me in and I sat on the shower stool, shampoo hair and had a good wash, after falling a few weeks ago in the shower, we now put a towel over the shower lip so I have a grip for my feet, we have a rubber shower mat which is in the middle of the shower, but the towel over the lip/step to get out works, so out I came and was dried and sat on the bed. David put a new dressing around on my catheter, I then went and sat at the dressing table fully dressed this time, to see my new hair colour, oh maybe I’ve over done it this time, wanted to go blonde but each time I’ve tried nothing is strong enough, I’ve got red hair naturally so it’s very strong when it comes to colours, so decided to use the bleach blonde highlight kit I’ve got, but this time put it all over my hair, David said, wow that’s a bit bright, but it’s ok, when your husbands says that you know it’s bright.

Negative to Positives

MS when it invades your world”, I think this title describes my world very well, I feel I’ve been invaded by something I have no control over, this is not because I’m depressed this is just how it is, the only way I can describe the feel is, if one day you woke up and everything had changed, things will never be the same, I asked my husband what I’m I supposed to do with my life now, surely I can’t just sit in this chair for the rest of my life, this I asked as a very serious question not “poor me what am I going to do” I have to re think my life how can I “Turn the negative into the positive”what am I good at, what can I offer and where can I offer it? So that my next quest, think about the positives.

When MS Invades my world

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