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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Thanks Amazon lady

 

 

 

MS Locked me Out Of My Cyber Space World…

 

MS Locked me Out of Cyber Space

I am very relieved to say that I am back… after MS locked me out of my Cyber Space world. I have been away from a couple of days, not on holiday again but away from communication… I have been locked out of my Cyber Space world because I lost my connection from my computer, actually from my blog…I got brain freeze; well that’s my excuse. I lost the ability to connect which put me in a real panic, especially as I couldn’t get hold of my sister, who is not only my editor but my right hand man/woman when it comes to sorting out problems.  Unfortunately she’s been unwell and has had to wear a neck brace because she damaged her neck (probably by sitting at a computer most of the night trying to help me out). She has probably over done things a little.

Look after your neck

Neck brace 

She recently returned to the workforce after 12 years looking after her son and managing the bookkeeping and office admin for her husbands engineering business… at 52 years young she decided to study for a certificate in Aged & community Care and is now a Personal Care Assistant working for a private agency caring for people in their own homes.

CRASH

Bicycle Crash

To add more drama to the situation her son also had an altercation with a bicycle and went flying over the handle bars when the chain came off.  He apparently went skidded across the ground on his face so has cuts and bruises over his face and most of his body… Being a teenage it was obviously not his fault … the chain broke so it was the bikes fault… And the fact that he was not wearing a helmet has nothing to do with the massive grazes on his face. But brave solider is still going to school (secretly I think it may be to get some sympathy from a certain young lady who he has become friends with as she takes the same train to school with him each morning).

Anyway my sister has had her own problems to deal with but I would like to tell you about a conversation we had last night, which I believe is an important topic to discuss…She said that having this problem with her neck was very painful and that she could not lay down to go to sleep – A trapped nerve in one of the vertebra in her neck which had subsequently sent the muscles at the base of her skull in to painful spasms. She started to tell me about how much pain she has been in… but then stopped and said “ well that is probably nothing compared to your constant issues”.

Well I made a packed with my sister a long time ago that we would stop saying sorry to each other… Last night we made another packed… and that was to agree that it is ok to talk about your problems as well.

carol-mike-werner-person-outdoors-under-a-tree-sitting-in-a-wheelchair

Person Outdoors under a Tree Sitting in a Wheelchair

I love this image by: Carol & Mike Werner Item #: 9009244  found at http://www.allposters.com/-sp/Person-Outdoors-under-a-Tree-Sitting-in-a-Wheelchair-Posters_i9009244_.htm

MS Locked me out of the everyday world

The image visually describes how it is to be locked out of the everyday world when you’re in a wheel chair…And this brings me to another topic which I would like to talk about! I believe that this is a regular issue for people who have a disability or chronic pain…sometimes people find it difficult or maybe “selfish” to talk about their own health of pain issues when they are talking to someone with a disability or chronic pain. Even close friends or family members sometimes feel that it is wrong to discuss their personal stuff…Please don’t think that the whole world revolves around our personal stuff and please do talk to us as you would talk to anyone else. No matter how well-meaning your reasons are… excluding us from your own issues just makes us feel more isolated and in turn just gives us even more reason to focus on our own issues… We are all normal people and sharing normal everyday conversations with friends and family means we can remain as normal as everyone else… Also knowing that you are hurting or upset or have worries as well… and in turn sharing those thoughts and feelings with us helps normalize our worlds. Does that make sense? I hope so… I don’t quite know how to explain it but In short it is important not to feel that our issues should stop you sharing your own issues. It’s a little like being locked out of my cyber space world… by not sharing your real feelings with your disabled friends your may be unknowingly locking them out of part of your world.

Dastardly lesions

Anyway getting back to the original story line…I did finally get to speak to my sister this morning/evening in Australia and she managed to put me right… she guided me step by step through the log in process so I was able to get back in to my blog page. I think that these “dastardly lesions,” were playing games in my brain again… and in the confusion I was trying to log in with the completely wrong details. Oh well I am back now and feeling a lot less stressed. This blogging has been a Godsend in my world and being locked out of that new world for the past few days has been very hard for me.

Anyway… One big problem resolved thank goodness but there is another problem with the comments and feedback so just give me a few days to sort this issue out with my sister/editor and then you will be able to send your comments/Feedbacks to me again… I have been a little concerned lately because the connection to this area of my blog does not seems to be working and it means a lot to me to read your comments and know what you all think so I need to get this sorted out ASAP. I hope you enjoyed reading about me being MS locked me out of my Cyber Space world. Please feel free to comment in the box below, or for more posts go to www.amazon-lady.com

 

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!

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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