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Afraid & Alone

Last night a wave of depression came over me, I felt very  tearful, isolated, Afraid & Alone  I felt very fearful of what lies ahead….It was not like me because I am for the most part, up beat and positive.  I try to help inspire others as and when I can, but last night something just happened… like a tap being turned on.  I think because I’m so positive it was more of a shock, these bad down times do happen and it shouldn’t be that much of a surprise really but all I wanted was a hug or to speak to someone apart from my husband, I have to be the strong one in the family so couldn’t tell him the way I was feeling. I have this way of saying when asked “how are you” I say I’m fine thank you, how are you. I never let down the shutters, I suppose it’s because I  am frightened that once there open I won’t be able to shut them again. Read more

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?

12397295-money-tree-concept-with-dollar-signs-for-your-design

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

 

 

 

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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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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