Suprapubic Catheter Hiccup!

Supra Pubic Hiccup!

Suprapubic Catheter Hiccup!

For those of you who are not regular readers of my blog…I recently had a Suprapubic Catheter fitted. All has gone well today but I thought I would write about my recent Suprapubic Catheter Hiccup!

My darling husband has become my own personal Male Nurse and taken on the duties of changing my dressing. The surgeon had told us that the dressing could be changed on the third day and by then the stitch would have dissolved. The third day arrived and armed with all the correct infection control medical supplies  at hand …(as below) my husband set about the task of changing the dressing…


-Sterile gloves
-Microspore tape
-Melolin absorbent dressing
-Disposable plastic hypodermic syringes (this is for the nurse when   she or he has to change the catheter in 5-6 weeks)
-Alcohol swabs
-Adhesive wound dressings
– Scissors
-Small black disposal bags
-Vinyl powder-free gloves
-Plus and a bag to put it all in
Quite a list of equipment but it is all required

Suprapubic Bag


…He gently removed the dressing and disposed of it in the small black bag that we hung on the draw handle of the bedside cabinet. We were both pleased to see hat it was healing quite well and the stitch had also dissolved the wound was a little gunky and red as expected but not looking too bad. So it was wiped gently with a sterile wipe, and redressed with an adhesive wound dressing, which was cut so it went around the tube, this was done each morning and evening, on the 5th day I was able to have the dressing taken off and have a shower.

I carefully washed and dried the area and a new dressing was applied, That was Friday morning the day we were going away for a weekend, so everything looked good. Read my post on our weekend away (if you haven’t already) http://www.amazon-lady.com/coping-with-ms-on-weekend-away/

On Sunday evening we returned home and my personal nurse/ husband helped to re-dress my stomach, but noticed the adhesive on the wound dressings had caused large blisters, a few of which had bust and started bleeding, they also looked very angry, so we decided to swap the dressings for melolin  absorbent ones instead around the tube, using the microspore tap and keep the blistered area open to get some air.

I had to find something else we could use to help this area heal, so I looked online as I do and read about Manuka Honey, it just so happens that my brother had given me a jar when he came over from Australia, so I read up on it and discovered Manuka has great healing powers as well as other many other uses, not just medical so ordered some medical dressings which apparently are excellent for bed sores, bad burns and lots of other skin conditions, so will give it a try on my stomach.

Manuka Honey

http://www.manukadoctor.co.uk

-Healing Power of Honey
-Components of Manuka Honey
-How Manuka Honey Is Used
-What the Science Says About Manuka Honey
-Possible Side Effects of Manuka Honey
Manuka honey is produced in New Zealand by bees that pollinate the native Manuka bush. Advocates say it treats wound infections and other conditions.   

Take a look at what the science says about using Manuka honey as a medicine. Honey has been used since ancient times to treat multiple conditions. It wasn’t until the late 19th century that researchers discovered that honey has natural antibacterial qualities.

Apparently Manuka Honey contains a special ingredient called Methylgyoxol Concentration which is the Unique Manuka Factor(or UMF) the higher the better, over 10 is best, but read the web site for more details.

Another product I have found that I will try to help with my Suprapubic Catheter Hiccup! is Anti Microbial Silver Spray, this is an Antibacterial, Anti-fungal and Antiviral (lots of Anti’s here)

https://en.wikipedia.org/wiki/Mānuka_honey

“The medical uses of silver include its incorporation into wound dressings, creams, and as an antibiotic coating on medical devices. While wound dressings containing silver sulfadiazine or silver nonmaterial’s may be used on external infections” this also might be worth a try, I purchased mine directly from the supply at Colloidal Silver UK http://www.colloidalsilveruk.com

Well let you know how I get on with the dressings and silver spray.

Suprapubic Catheter Hiccup!

Please also pay a visit to: http://www.amazon-lady.com

 

 

 

Coping with MS on weekend away

 Coping with MS

Coping with MS on weekend away… At long last went away for the weekend with my lovely husband, how did I cope with MS on weekend away?…  I was very worried how I would cope what with my progressive MS and my new Suprapubic catheter, I only had it put in the week before we went away.

Hatherley Manor HotelThe Hatherley Manor Hotel http://www.hatherleymanor.com my husband booked had a room accessible to a person in a wheelchair, and was on the ground floor so all looked good, it does demonstrate that wheelchair access to one person is not wheelchair access to another. The first problem the door to the room was a standard size opening, so my husband had to go in first, I held the door open the best I could and he pulled my wheelchair in, as I could not wheel myself in.

When we got in the room ok the bathroom I would say was a little larger than the average hotel bathroom and I could just get in there with my husband lifting the wheelchair through the sliding door, that once again had a standard opening, I could get my wheelchair under the sink which was great, unfortunately there was a very large mirror in front of the sink which on reflection was frightening, especially on Saturday morning when I saw my myself without makeup on Halloween of all days (no fancy dress needed here) back to the bathroom, shower on a hook on the wall in the bath,(how can that possibly be wheelchair friendly, was I supposed to magically get up and walk, get into the bath to take a shower, holding the grab rail with one hand and the shower head with the other) I don’t think so, the toilet did have a grab rail but I could only use it if I have brought my raised toilet seat, so the only part of the bathroom I could use was the sink.

The rest of the room had a small corridor from the bathroom to the bedroom which once again was standard width, could not get to the bed in my wheelchair as a bedside cabinet, small dressing table, two chairs and round coffee table in the way. The only way to access the dressing table was for the my wheelchair legs to be removed and bed side cabinet to be moved, to get into bed we had to get my chair as near to the right hand side of the bed (I sleep on the left) and hubby pulled me up, and we had to walk holding each other slowly to the left side of the bed avoiding the chair and large coffee table which could not be moved as there was no were to move them too, eventually got to the left side and I was helped to sit on the bed, one hell of a way down to the softest bed, almost like a water-bed that’s how soft low and squishy it was, we both thought it was the size of a small double or a large single. Anyway each time we went out or came in we had to got through the same rigmarole, but the restaurant made and effort to move a chair so I could sit at the table with my husband opposite, the service was very good and so was the food, beautifully presented and extremely tasty. All in all we had a great time away and my hubby has sent an email to the hotel highlighting a few of the issues we had during our stay… great to get away but just one question… why don’t companies employ a wheelchair user to advice them on what is needed in a room for a wheelchair user?

Gloucester  http://www.thecityofgloucester.co.uk/

Gloucester Cathedral

Our hotel was only 5 miles from the city centre of Gloucester so we spent the first morning going around the Quay then the Cathedral. The Cathedral is wheelchair friendly thank goodness, as soon as we went in I was taken aback by the sheer size and majestic sight of the architecture, the stain glass windows are beautiful defiantly recommend a visit.  We found a lovely little cafe to have lunch, in the centre which was a pedestrian only area near the Cathedral, weather so nice we sat outside and watched the world go by.

Cheltenham  www.visitcheltenham.com/ Cheltenham

Was the next port of call, we ended up just driving round and through the centre, as we couldn’t find anywhere to park, it was Saturday afternoon so not surprising really, the city looked lovely but without a place to park we decided to go back to the hotel to have tea and cakes(much better idea I thought)

That evening we had a great meal which was very tasty, and beautifully presented, the staff couldn’t have been more helpful. After diner we decided to have an early night so back to the room to watch a bit of tv before I feel a sleep.

Stratford-upon-Avon  http://www.visitstratforduponavon.co.uk/

Next morning Sunday after a great breakfast (full English for my husband of course) we checked out and decided to visit Stratford-upon-Avon, had to see the Bards house(Shakespeare) the place was packed, God knows what the summer would be like, took the obligatory photo and went down to the water side, was treated to a wonderful market and barges using the canal and locks. My poor husband was pushing me around as the terrain was very hilly and I didn’t have the strength to wheel myself. We still through we’d try one last place before we joined the motorway to head home,  nearest place of interest was:

Warwick  https://www.warwick-castle.com/

Aerial-View

Warwick Castle the entrance to the grounds looked impressive, but no where did it tell you how much it would be, but we decided to end our trip no matter what the price, saw a sign for disabled parking so headed for that, but we were stopped by an attendant saying sorry disabled bays now full, but we could park further down in the coach area, so off we when parked got into “Zippy” my wheelchair and headed for the Castle up all I can describe as a dirt track which was very very steep, my husband had to stop several times to catch his breath, even couples with baby buggies were struggling, well some how we got to the top and then saw the price, £6.00 for parking and £28.00 each to get in, my husband asked an attendant if there were any concessions but she said no one price for all, when he explained I was in a wheelchair she said that I could only access the surrounding grounds as everything else have steps and was not suitable for a wheelchair, she said if we didn’t want to enter she would call up the parking guy to let us out free of charge from the car park. If we have looked at the web site before we arrived we would have found all this out, but we didn’t so let that be a lesson for anywhere you are thinking of going, check first, the following was on the web site.


Warwick Castle was built as a mediaeval fortress and as such has a number of steps, narrow passageways and low doorways which can present a challenge to guests with reduced mobility. Should you require any further assistance during your visit, please speak to a member of the team who will be happy to help.


Though we were a little disappointed at least we tried.  the journey home took 4 hours but it was nice to get back, especially to our new firm bed. As the saying goes ” it’s nice to go away but always nice to get home”. But all in all I coped very well with my MS on our weekend away.

I hope you enjoyed reading Coping with MS on weekend away. To read more posts please visit www.amazon-lady.com

 

 

Happy Halloween Birthday SIS…

Happy Halloween Birthday SIS…

Halloween

Happy Halloween/Birthday sis.  For those of you who did not know… 31st October is Halloween and also the birthday of my sister, better known to you as Amazon-Lady. She has taken the time to go away for a well deserved long week-end break with her hubby, so I would like to take this opportunity as editor of Amazon-Lady.com to wish my sister many happy returns.

I did ask her if i could publish a post whilst she was away and she did say i could do anything i like… Well ! Tempting though that may be… I will just use my current power to say a big…

Happy Birthday…and  I also want  to say that I am very proud of what she has achieved this year… This blog has been so good for her and by the 12,000 plus comments and endless users i think many other people enjoy the content  too.  Please feel free to send your birthday wishes to her in the comment box below or read more of her posts at www.amazon-lady.com Thanks for all your fantastic feed back and lovely comments.

Editor / sister amazon-lady 🙂

Ps hope you have a great Birthday and lovely weekend away love from little SIS XXX

Happy Halloween Birthday SIS…

 

New Electric Bed

New Electric Bed

New bed is here

Well it’s Friday and two vans with delivery guys have arrived, one van is to take away our old bed, one van has our new electric bed. So the first problem arises, we live in a chalet style house, and what with the tight small stair case which now has my stair lift fitted, and low over hang to the ceiling and a very narrow front door, they are having trouble getting the new bed up the stairs, the pictures have been removed from the walls in case they get knocked, my husband did dismantle our old bed this morning and stack it next to the upstairs wall ready, but to get it down stairs the guys will have to use a saw to dismantle it, it originally came in through an up stairs window which was taken out when we moved in to take furniture up stairs.

The hoover has now gone up as I’m sure the sawing has made a mess (think I need tablets to calm me down, if only I still drank) tea and coffee break upstairs and scratching of heads by men including my husband (he does like a drama) as to how they would get the rest the old bed down?

More sawing and now hammers, (getting a headache, still have pills for that) bits of new bed base going up, (I’m sitting in the front room on my rise and recline chair, watching men going in and out of the house) now drill in operation to connect the base of new bed together, more hovering (Nice to know  they are cleaning up after themselves)

New bed in our bedroom now and looking better than I hoped, my husband took a picture for me on my tablet, saving a journey up stairs, he will make up bed shortly and I can see it in all its glory. Looking forward to a demonstration of how it works when I go up to bed this evening, I hope I have a good nights sleep tonight, a new bed that you haven’t tried is taking a risk but we couldn’t try before we bought the bed, or should I say before the MS Society bought the bed for me (thank you MS Society) I will write and thank them personally with a photo tomorrow.

Last night had a great sleep, the first time in a long time, I was able to raise my head and legs into a comfortable position at last. My husband didn’t sleep very well for two reasons, said the mattress was a bit hard, but he will get use to it, and my snoring, unfortunately I can only sleep on my back at the moment, until the tube from the Suprapubic Catheter heals, then I should be able to turn over or alternatively I could buy him a pair of ear plugs, anyway that’s my new electric bed experience.

Thanks for reading about my New Electric Bed to read more posts please visit www.amazon-lady.com

 

Suprapubic Catheter

Supra Pubic CatheterSuprapubic Catheter

Suprapubic Catheter finally in place: I went in to hospital yesterday at 12.50pm and was given a general anesthetic at 1.30pm. Arrived in recover and woke at 3.30pm, then I was wheeled back to my room at put into bed at 4.30pm; I was given a ham sandwich, yogurt and coffee. The Surgeon came in said all went well but glad he did the operation under X-Ray because my bladder wasn’t quite where it normally should be; instead of being on the left it was central and lower than normal… but no problems, Suprapubic Catheter inserted ok- He did have to use a number 5 drill bit to get through all the fat 🙂 Not really … he didn’t.

I asked if the whole would shrink as I lost more weight, he just smiled at that question but said he had put dissolvable stitches in the wound, and a dressing was put around the catheter, he told me not to get the dressing wet, or clean or redress the wound for about three days.

The compression stockings they gave me (don’t match any outfit I’ve got but never mind) should stay on for a week, to avoid DVT  (deep vein thrombosis) then the pharmaceutical guy came in to give me a weeks supply of antibiotics and the nurse gave me some extra dressings. I was dressed by my husband and then was very pleased to hear that I was to be discharged because the procedure went well with no complication.

I thanking all the nurses as I left the hospital… We got home at 7.15pm and enjoyed my freshly cooked salmon salad my darling husband then cooked for me. I slept really well considering what I went through, but I think getting rid of that blessed hanging Indwelling catheter made a huge difference – now all i have to do is get use to the new routine.

Day one with new Suprapubic catheter: I gingerly took a look under the bedclothes to make sure nothing had happened overnight and to my great relief everything was still in place no leakage, night bag still upright and connected. It is a very strange colour though colour of rosé wine, (not for drinking of course it must just be blood and medication) it does make you think what’s in rosé wine though! No not really that’s just my sense of humour or maybe still the effects of the general anesthetic.

Anyway I had to work out how to get to the bathroom still attached to the night drainage bag (decided to keep attached till I worked out how to ware the hip bag) so put the night bag on my tray on my Zimmer frame and taking it easy and being careful not to slip with my new support stockings on; managed to empty it in the toilet and sat carefully down and placed bag on its frame on the floor, got up carefully holding on to the support rail by the toilet, the sink and got to my feet and put the night bag back on the Zimmer frame and went and sat on the bed.

With hubby’s help put the Velcro strap around my waist and attached the hip bag to the catheter, got dressed and went downstairs with the help of “Mario” my friendly stair lift (those that know me are aware I have to give my equipment names) it was a real joy “something you may find a little strange” to not have something sticking into me when I sit down, simple things ah!

Little leakage from my urethra when I bent over ,called the nurse (which she told me to do if I was concerned about anything) she said that as my urethra had not been sealed up completely, a little leakage might happen, this was quite normal as the Urologist would have inserted the catheter as lower down in my bladder as he could, but would not stop leakage happening completely, she suggested I just wear a pad just incase. She reassured me that everything was fine. I still would highly recommend anyone thinking of up grading to a Suprapubic, go for it hopefully you will have the same great experience I have had.

Electric Bed coming Friday.

to read more please visit www.amazon-lady.com

Suprapubic Catheter

 

 

 

Depression the hidden side of MS

Depression the hidden side of MS

MS missing the simple things

I have received a great deal of comments about depression, which has got me thinking… There is a definite stigma attached to depression and I believe that we do not talk about the subject as much as we should and hopefully the more we discuss the topic, the more understanding people in general will have.

Depression affects people in so many different ways, and in varying levels; however when you are dealing with a debilitating condition (such as MS) and are unfortunate enough to be hit with a bout of depression as well… dealing with everyday issues becomes that much more difficult.

I know everyone can have bad days from time to time and these bad days can be triggered by a number of things: A bad nights sleep, arguments, the weather, and so it goes on, but depression when you have MS as well it can be a completely different thing, I can only talk about how I am effected by Depression with MS (Every one feels the effects in different ways) but I would like to tell you all about a few of the simple things that affect my days.  The hidden side effects of MS / depression are things that the average person sometimes take for granted and maybe don’t fully understand how having MS and depression is quite a different “kettle of fish”.

Some very well-meaning people say to me – ” you could help do something surely” !  But no i can’t ,not like I use to anyway.  I can’t use my left hand, let along get close enough to the work tops or cooker, that certainly depresses the hell out of me.

My depression hits hardest when I think of what I have lost and when I think about things that I can no longer do.

As I said it can be the simplest little things like the following…

  • Lighting a candle: If I want to light the scented candle which is on the coffee table, I can’t get over there or hold my hand steady enough to light it.
  • Dropping something: It could be dropping a tissue on the floor but my grab stick doesn’t reach,
  • Cooking or preparing meals: not being able to cook or prepare food any longer (I use to cook and experiment a lot) I have over 300 cookery books and God knows how many herbs and different spices, pulses, grains, and pastas
  • Dusting and general cleaning: I never expected I would miss cleaning and washing but I do, I hate the fact that I see things at the level I do in my wheelchair I want to get at and clean, behind and under things, things I don’t want to mention to my husband that he’s missed.
  • Laundry and hanging the sheets out in the lovely fresh air. Being in a wheel chair makes simple tasks like doing the laundry and then pegging it out on the line pretty difficult if not impossible.
  • Dressing myself without help & having a shower without help watching my husband do everything for me. I know when you get married you say in sickness and in health, but I never expected the man I love would have to become my carer… that depresses me.
  • Holidays without a disability: We watched the TV the other night and there were places my husband and I have been on holiday, but I couldn’t go there and enjoy it the way we did before, that depresses me greatly.
  • Family distance and travel issues: Missing my family in Australia and remembering how I was not able to go to my father’s funeral, that depresses me.
  • Seeing houseplants die because I can’t water them, or care for them , or just potter around my conservatory as I use too, that depresses me too .

So depression when you have MS is a different depression than those that don’t have the disease. I have Progressive Multiple Sclerosis, so using my legs to walk has gone and my left hand can’t grasp or hold anything, even my food has to be cut up for me, that’s depressing and at 56 years of age I didn’t expect this. 

Sorry to be negative but sometime we just have to accept reality… not all days are good days and sometimes I feel a little down but I am sure tomorrow will be another day with lots of positives. One of the ways I deal with my depression is to try to get the negative stuff out of my head… writing this post has helped me do that, so thanks for reading Depression the hidden side of MS  all the best AL

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MS Depression has hit


Not PURR-fect

MS Depression has hit 

 I am feeling a bit sad at the moment but for those of you who are in similar situations we know that “every day with MS is not PURR-fect! Depression is just another one of the things we have to deal with  but when it does hit you have to try to remember it will pass, but until mine does I thought I would tell you how I’ve been feeling.

I was watching the TV last night with my husband when I realised that i had been hit by depression…actually it has been building up for a few day now but  it eventually came to a head last night. Sitting there emptying my catheter into an empty water bottle, balanced between my feet, I just had a big reality check…. I said to my husband “I can’t believe I’m 55 and having to empty my bladder into a bottle in the front room”. I know I am due to have a Suprapubic catheter fitted this month, but I have had a indwelling  catheter now for 14 months ( for those not familiar with this and where it is positioned in a women into the tiny hole that is above your vagina that leads to the urethra) that is where the catheter tube is inserted. Then a balloon  is inflated with sterile water via a syringe to keep it in place My Catheter has come out 17 times in 13 months… so I have had to go through the very uncomfortable and less than dignified exercise  of having a new one placed into position. Having to be subjected to this 17 time has made the whole area very sore and inflamed. Not happy at all! 🙁

The whole thing is very uncomfortable and i am really over it at the moment…But i have very few alternatives. Each morning I struggle trying to get the catheter in a place to connect the drainage bag, were its comfortable which invariably it’s not, so I am constantly moving around and trying to adjust it into a more comfortable position and having to sit on it all day long is depressing in its self.

I hoped to have aged gracefully and with dignity as I have tried to live my live for the last 55 years but the sad reality is that any dignity or air of mystery has long since disappeared, and I now feel grumpy, sad and unattractive , some days i just feel like I’m  just a disabled woman sitting in the corner all day.

I questioned whether to post this because  I have been on such a high lately, but i have always tried to write my posts from the real world prospective and not every day is a good one … so why not just write it! It may help  brighten up my mood. Your comments  have been so uplifting and I don’t want to dampen people’s spirits by being too gloomy. I also started writing this blog under a pseudonym  so I was anonymous, but a few of my friends have now seen the blog as well as relations and with that in mind I have to be careful  what I say and write about so as not to offend or worry anyone. But I have always tried to write about the good and bad, so maybe I should post this as you should know that if you do get down its quite normal, it happens to us all some times.

Fatigue

I don’t know if this is all connected but my fatigue is much worse, I’m finding it a struggle to keep going from the time I get up at 7.30-8.00am, till lunch time at 1.00, after I have something to eat (which in its self is a struggle just to keep my eyes open) I fall a sleep at about 2.00pm until 5.00-6.00pm, so spend 3-4 hours a day a sleep. So if we do anything or go anywhere we need to go in the mornings, all Doctors/Hospital or physiotherapist appointments are made early in the morning, I still need to go to bed at 10pm, I can normally sleep for a couple of hours, but after that I’m awake, can’t turn over what with being plugged into my night bag, and the fact I can’t turn over anyway, tried everything to get comfortable but nothing works, can’t wait till my electric bed comes, hope I can get comfortable and sleep at night, that might help with the need to sleep during the day.

I always like to try to finish things on a lighter note so here is my light-hearted advise…If all else fails you could stand on your head or turn your world the other way up…

Different angle

On a more serious note … Depression can be serious so please consider getting help if you feel that your mood is something to worry about. There is a lot of help out there so you don’t need to be alone. The MS society Uk has some great info at the following link. https://www.mssociety.org.uk/what-is-ms/signs-and-symptoms/mental-health/depression


Signs of depression

Perhaps 50 per cent of people with MS experience this more serious depression at some point.

You are considered clinically depressed if at least five of the following symptoms are present for at least two weeks:

  • depressed mood, feelings of hopelessness and despair
  • significantly reduced interest or pleasure in most activities
  • changes in appetite and noticeable weight loss or gain
  • insomnia (inability to sleep) or hypersomnia (excessive sleeping)
  • feelings of excessive restlessness or sluggishness
  • fatigue or loss of energy
  • feelings of worthlessness, excessive or inappropriate guilt
  • reduced ability to think or concentrate, or indecisiveness
  • recurrent thoughts of death or suicide

Please do seek help if you experience these symptoms for more than a fortnight.


Any way that’s all for now I hope you enjoyed my post about MS Depression has hit

Bye for now AL

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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

 

Amazon-Lady celebrates 50th post

Amazon-Lady celebrates 50th post

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

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

We have come such a long way since April 2015 when we published the first post. What does MS really stand for?

  • Multiple Sclerosis?
  • Major Seclusion
  • Many Situations?
  • My Story?
    My Story begins… Hello and welcome to my blog. This is my first
    attempt at blogging so please excuse me if I don’t follow the normal structure.

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

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

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

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

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

 Amazon-Lady celebrates 50th post

 

 

 

How my life has changed since being diagnosed.

How life has changedHow my life has changed since being diagnosed

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

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

Adult to child

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

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

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

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

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

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

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

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

Bye for now AL.

How my life has changed since being diagnosed.