Taking one day at a time.

 

Roberto Matta

http://en.wikipedia.org/wiki/Roberto_Matta 

Getting back into writing my blog every day is proving more difficult than I thought, especially when everything seemed to be going against me.

Last Thursday when I wrote my first post since I stopped blogging on the 11^th of December I was very happy until I tried to post it on my blog.

I had chosen a picture by Roberto Matta, however when I went place it on my blog everything froze and nothing would cooperate with me.

After a while I tried to publish my blog post without the artwork but that did not work, in the end I was so frustrated that I decided it was better to stop and try again another time.

However everything went differently to how I planned and I did not manage to get back to using my laptop until Monday this week.

Then I was surprised to see that my blog post despite all the problems had been published on my blog just without artwork and a title and labels.

After I added the missing artwork, title and labels I realised I would have to stop as my index finger was not cooperating with me.

So I reluctantly shut down the laptop and decided to relax which is not always as easy as it should be, but I did my best.

Luckily this week I've been able to do my arm and leg exercises Motomed without the discomfort I have been experiencing in previous weeks.

Because the curvature of my spine is progressing it means that the backrest on my wheelchair does not fit me well anymore and does not support me as it should.

The result in recent weeks has been the I am sitting leaning to the left which is not a pleasant way in which to do 45 minutes of exercises.

I was getting quite downhearted thinking in due course I would not be able to do these exercises which are vital for my well-being.

Luckily Richie has been able to sit me in a wheelchair in such a way that I am able to do the exercises on the Motomed without any discomfort.

Hopefully my joy will be made complete when I can successfully publish this blog post with artwork, title and labels tonight, then I will be happy.

If Only Dreams Came True.

 

Roberto Matta.

http://en.wikipedia.org/wiki/Roberto_Matta 

Today I've been quite introspective which is not surprisingly given my situation of having multiple sclerosis and curvature of the spine.

Right now I don't want to be involved solely with my thoughts, that is why writing my blog has been and still is a very important part of my daily life.

Writing my blog has been crucial for me, I think it has helped to strengthen my resolve to enjoy everything that I can while I can.

It has put me in touch with lovely people from all over the world and that has been wonderful, it is so good to be able to get to know other bloggers.

The support I've received has been quite phenomenal and I appreciate all of it very much, I also enjoy being able to support other bloggers too.

I think that being able to support each other is absolutely essential for us as human beings; we need a society where mutual aid is central.

That would be much better than the society we have right now where everyone is competing against each other.

We all do so much better when we cooperate with each other for our mutual benefit, if only this were possible what a beautiful world it would be for us all.

Right now this is my dream hopefully it is one that is shared by others and it will be reality someday soon, for now I'm going to keep the dream alive.

Being Philosophical.

 

]Roberto Matta.

http://en.wikipedia.org/wiki/Roberto_Matta 

Roberto Matta.

It has been extremely frustrating to use Dragon voice recognition this afternoon as well as this evening, until now 19.35 I could not dictate my text.

What amazed me is the fact that I kept calm and cool however there was nothing I could do except wait for the Dragon voice recognition to work.

Which it has, finally it’s started to type in the words I am dictating, what relief as I was beginning to think that wouldn't be able to write anything today.

I was trying to be philosophical about it although that was incredibly difficult for me to do especially as I never like to miss writing my blog even for one day.

My other frustrations just now were with the fact that I could not pay for something using PayPal as they also seemed to have a problem.

I decided to stop trying to pay now and to return to it later on this evening and if that doesn't work then I will try to pay tomorrow.

The other thing that was not working for me was trying to ring a good friend, Gareth.

To let him know that we are thinking about him, his mother and his brother and sister now that his beloved father has died.

Over the weekend I had somehow added an extra digit to his telephone number which was the reason I could not get through on Saturday and Sunday.

Gareth has just phoned me, however I had to phone him back as he could not hear me, it was good to talk to him especially because of his dad.

Hopefully the last thing that was frustratingly will finally work with me in a minute and I can pay via PayPal for the item I have ordered.

I'm so glad that I have not let these annoying and frustrating things get to me much better to remain calm and wait for everything to improve.

Which it did do, then I received the phone call from Gareth, it was good to talk to him and let him know that Richie and I are thinking about them.

Tomorrow Is Another Day.

 

 Roberto Matta.

http://en.wikipedia.org/wiki/Roberto_Matta 

The weekend is flying by as it always does; it is nearly 20.00 on Sunday already which given that time is flying by feels like it is going at double speed this time.

Last night we were up late to watch Match of the Day on BBC with all the football games from the Premier league.

Following that was the Football League Show which shows all the football games from the Championship as well as League One games.

Afterwards we got talking and totally forgot track of the time so we stayed up much longer than we would ever have intended to do so.

Consequently we slept until quite late today as we were both very tired, it was a shame as both of us had planned things we wanted to do today.

Never mind tomorrow is another day so I'm not going to reproach myself about today, what would the point be in that.

would be no point and the only thing it would achieve would be to make me feel miserable and Richie too.

Instead of wasting my time beating myself up I'm going to look for some artwork after which I will publish this on my blog.

Then I'm going to relax and enjoy the evening, tomorrow I will get on and do the things I'd planned to do today, right now I'm enjoying the evening.

Sunday, 10th November, 2012 The Reality Of My Life.

 

Roberto Matta.

http://en.wikipedia.org/wiki/Roberto_Matta 

It is good to have many distractions as I do, however it does not mean that I have forgotten my severe handicap.

I just do not want to concentrate purely on writing about my multiple sclerosis and how it is progressing.

As I've always been somebody who is interested in the world around me my blog reflects this aspect of my personality.

Sometimes I wish that I could forget the fact that I've become severely disabled since my diagnosis of MS in 2006, if only I could forget.

I wish I could totally forget it but I can't because it's ever present and it is becoming more and more obvious that my spine is getting badly malformed.

Even if I could walk I would not be able to stand up straight, instead I would be very crooked and I wouldn't be able to make eye contact with other people.

The de formation of my spine is making me feel a lot of pain and discomfort; I was naive enough to think that I would not have to endure anything apart from the MS.

How wrong I was, my spine is making me bend to the left, when I am in bed I don't notice it but as soon as I'm either in the shower chair or wheelchair I notice it.

Last night it was making me quite miserable thinking about my deformed spine, I hate having not only to cope with this shitty multiple sclerosis but also with my spinal de formation.

There are moments like yesterday when it all become just too much for me, last night watching the football on Match of the Day on BBC one took my mind off my situation.

I am not going to simply let myself be distracted without remaining totally aware of my current situation, but I'm not going to let my handicap rule my life.

I am more than this nasty progressive disease and my deformed spine, I am a brave resolute woman who is determined to make the best of everything and enjoy the moments.

Determined to give it a go.

Roberto Matta.

http://en.wikipedia.org/wiki/Roberto_Matta 

It was tremendous relief that yesterday's catheter change at the hospital went so well.

last night I was hoping that as a result of the success at the hospital that I would get a good nights sleep.

sadly this did not go as I wanted, because I woke up at least five times during the night, this was due to my legs being extra painful.

the other reason was that the duvet is still too warm for me because the weather while cool is not cold enough for such a thick cover.

tonight I shall as Richie to replace the duvet, with an blanket in a duvet cover which should give me all the warmth I need, without making me uncomfortable.

this afternoon I had a very pleasant visit from Anne, who visited me for two hours which was lovely.

We had a good time chatting and laughing, at the end of the visit I promise that I would be more proactive and called her regularly to ask for a visit.

On Monday I mentioned that I would be practising how to use the Seetech computer, which would mean I wouldn't be able to blog until I was Seetech literate.

When I got back from the hospital yesterday I just wanted to write a brief post using Dragon voice recognition, after which I would practice on the Seetech computer.

I did have a look at the Seetech computer together with Richie, it was even more difficult I imagined.

What confused me was not understanding exactly what I have to do, I tried opening various items and only succeeded each time in closing down the computer totally.

after an hour when I was starting to get a headache, we decided it was enough for one day.

I'm hoping that it will get easier time I tried to use it, it would be nice if it became clear to me quite soon exactly what I have to do.

Learning how to operate new software is not going to be easy and not as quick as I would like, I want to write my posts on my new computer right away.

I realise now that once again I'm going to have to be extremely patient and take things one step at a time, not easy for me but I'm determined to give it a go.

Overcome My Fear.

 
Roberto Matta.

http://en.wikipedia.org/wiki/Roberto_Matta

This afternoon I have realised that I need to start using the Seetech computer which is in the other room.

Since the English and German dictionaries were installed over 10 days ago every day has gone by without having a go.

Richie quite rightly was remonstrating with me about the fact that I haven't bothered to use the Seetech computer yet.

He is right of course I should use it, and I absolutely agree with him that I need to start using the Seetech software now.

It became pretty apparent this afternoon that I do need to move on, as I'm having a difficult time trying to click using an increasingly ineffectual left-hand.

After talking to Richie, I thought about what he said and realised not only how right he is also why.

I realise now one of the reasons I'm putting off starting using the Seetech computer, is that I will no longer be able to use my hands.

There is no doubt that my hands function is getting very bad now and will cease altogether very soon.

I think I've been trying to avoid acknowledging this by not using the Seetech computer, how funny that have been trying to fool myself like that.

The other reason is that I'm finding the idea of using my eyes to operate a computer worries me, because I don't know how it works and               what I have to do.

Having thought this all through I know now that I am going to start using the Seetech computer from tomorrow afternoon.

It would be nice if I could manage to write a short post on my blog, but it may not happen tomorrow, in which case I will be back blogging as soon as I am Seetech literate.

Enjoying The Sunshine.

Roberto Matta.

It’s been both summer and autumn day, when I woke up this morning, it was quite cold and there was a thick cloud cover.

It was so cool Richie closed both bedroom windows as well as turning on the central heating for 10 min to take the chill off the room.

In the afternoon the cloud cover vanished and was replaced by a lovely blue sky and pretty sunshine which lasted until nearly 19.00.

Today it has not been easy for Richie to get me sitting well, nor has it been possible for me to maintain my position for very long.

As I can't sit well it means that it is more difficult for me to do simple things like backspace to delete or even reach for either my hanky or THC.

I guess it's just one of those days as I've been sitting extremely well for the last couple of weeks, and now this happens today.

How very typical for this to happen today and despite all Richie's excellent efforts to achieve a good sitting position for me.

I am glad that even so I've been able to carry on dictating using my Dragon voice recognition software and editing as I go.

I need to learn how to move word is close to each other once I have deleted words that are either misspelt or just not the words I wanted.

Knowing how to use the mouse via commands as well as learning how to get Dragon to open other applications would be very useful.

Especially after my left index finger, thumb and little finger no longer can function which is not long now I think.

My intention is to be ready when that happens, so that I can carry on communicating.

Via my blog, e-mails as well as read the newspapers, play solitaire and purchase pretty things on eBay.

Now that I cannot go out to the shops eBay has become the shop I can visit and either window shop or buy both are pleasant to do.

Well now that I've finished I shall find a picture and place both on my blog, after which I'm going to enjoy Richie’s company when he returns from the Rembrandt Park with the dogs.

Looking forward to tomorrow.

Roberto Matta

 http://en.wikipedia.org/wiki/Roberto_Matta

 

It has been a pleasant day today, funnily enough the sunshine got stronger after 18.00 this evening.

Tomorrow at 11.00 somebody from RTD will be here, bringing the Seetech computer with them.

I am very much looking forward to getting this, as my left index finger is not functioning well and sometimes I have to use either my thumb or knuckle.

Neither of which is very efficient and it takes me ages to click on something which is enormously frustrating.

I'm hoping that from tomorrow I will be able to use the computer without any unnecessary stresses.

My plan is to write my blog, as well as e-mails, letters and Word documents using Dragon voice recognition.

I can do all the corrections and the editing using the Seetech software which can be very handy as I am not going to be able to move the cursor much longer.

The Seetech will be handy for surfing the Internet as well as to help me visit other blogs something I'm looking forward to enormously.

I'm going to keep this short as I want to get it published on my blog and then I can relax and enjoy the sunshine outside.

Happy Memories.

 Roberto Matta.

http://en.wikipedia.org/wiki/Roberto_Matta 

Today is another unpredictable day, 1 minute it looks pleasant, the very next there is torrential rain, it is just like April and not like August.                                                         

Global warming is really starting to have an impact now, as all our seasons are turned around, summer in spring and autumn in the summer.

Again I slept really well last night; I even managed to sleep through until midday today, something I have not done in years.

That means that I'm late going to the shower, toilet but no worries as it is nice to have a lazy day on Sunday.

It reminds me of Sundays before I had MS, when I loved a lazy morning, lying in bed, drinking tea smoking joints and talking to Richie.

Pleasant memories of happy days, we had at that time a lovely Staffordshire terrier cross called Daisy.

She liked joining us in the bedroom; she would on command get her bed as well as her blanket, the bed she would put by the radiator and the blanket in bed for her to snuggle under.

Daisy was very clever like that; she also knew how to put her toys away at the end of the day which no other dog we have had since can't do.

Our trio of beautiful dogs, Marleen, Cyril and Tina get on very well together and make a wonderful happy pack.

What is really brilliant is seeing how happy and confident Cyril has become; his confidence has grown tremendously since the beginning of the year.

Finally he has been able to be a dog, something it seems he was not allowed to do in his old home, horrible to think of an active dog like Cyril being deprived of exercise.

 I'm so glad we took him in January 2011; it has been quite a challenge trying to win his trust, now one year and seven months later we have a lovely dog.

Re-homing dogs is very worthwhile thing to do especially because it means avoiding buying dogs from puppy farms, something we do not agree with. 

Finally the rain has stopped and the weather has improved, at precisely 20.00 this evening the sun came out and the sky is blue now.

Richie is making us a delicious dinner which I am looking forward to, after we have eaten or look for artwork and put this on my blog, happy days.

Optimistic Anticipation.

 

Roberto Matta

http://en.wikipedia.org/wiki/Roberto_Matta

  

This morning was not my favourite, because Milou, the wound nurse from the rehabilitation clinic was coming round to look at the progress of the wound healing.

Milou is a lovely young woman; very competent at her job, despite that I get very nervous before a visit just like I did when Ton used to visit before he retired.

It is really quite funny how anxious I get before these visits, but I think it is quite understandable it is not very pleasant needing someone to examine my bottom.

I have total confidence in the staff from the rehabilitation clinic, but I am really looking forward to this wound healing so I don't have to see them every two weeks.

Today Milou informed us that the wound was smaller than when she saw it two weeks ago, this is very encouraging news.

She did not say when she thought it would be closed up however Milou did seem very optimistic.

I think I will try to be optimistic too even if it is hard to do especially because I've been in bed now since 23rd of February this year.

Wednesday next week I will be getting the Seetech computer which will arrive in the nick of time because my hands are not functioning well.

Today I've had to resort to using my thumb to move the cursor as well as opening and shutting applications.

Considering that four years ago I thought my hand function was not going to last for much longer, I've done very well in being able to type all this time.

However in the last year I was only able to write short pieces for my blog every day, this was frustrating but it was the best I could do.

Hopefully I will be able to learn quickly how to use Seetech, my plan is to alternate between Dragon's speech recognition and Seetech.

This was a suggestion of Matilda my physiotherapist, who thought that I would prefer to use voice recognition to write my pieces and Seetech to correct with.

As well has surf the net, answer my mails, read the newspapers and many other things that will be much easier for me to do.

I'm looking forward to getting the new equipment next week, although I'm also worried whether I will be able to learn how to use the new equipment as quickly as I want to.

Interaction With Friends.

              

Anthonio Carneiro

http://en.wikipedia.org/wiki/Ant%C3%B3nio_Carneiro 

Luckily for me today is another changeable day with loads of clouds and a cool breeze, amazingly it's already the 1^st of July.

Quite unbelievable given the cool weather we've been having since May, it really is either April weather or autumn, not summer which it’s supposed to be.

Still feel quite mean hoping for cool days, hot and humid weather like on Wednesday is quite catastrophic for me.

On Wednesday I couldn't do anything apart from look at my blog as my index finger could not function in the heat and I felt terrible.

All I could do was to open posts and save as drafts so that I could write up my notes the following day.

On Thursday there was breeze which helped me to function better than the day before, it was quite a relief for me and I'm sure for many others too with Multiple Sclerosis.

I really hate looking forward to it being cool and overcast, that really is not me I'm somebody that loves sunshine and still do as long as the temperature does not get any higher than 24° with breeze.

Our good friend Anja visited us on Friday, which was lovely it really is nice to have friends around; sadly her visit was short.

Visits with her are always too short and no wonder as it always such a pleasure to see a good friend like Anja.

We discussed the council and we agreed that if I had not heard anything on Wednesday, I would let her know and she will phone the council to enquire.

On Friday Anja’s partner Erik and their son Bosse came by to pick her up, it was really nice to see both of them again.

It is noticeable how few people we see on a regular basis, but that's how it has been for quite some time, especially since I became less mobile.

It was not so obvious when we were both still could go out to work and after work we could stroll around and enjoy this beautiful city and see friends.

Then I became handicapped and had to stop work, ever since then our world has become smaller, which we try our best to ameliorate as much as possible.

These days any interaction with friends is so good for us, it really is enjoyable spending time with other people and engaging with different ideas.

''Comeback Kid''

Lucebert.

http://en.wikipedia.org/wiki/Lucebert


So aware these days of every little change that is taking place in my body because of the MS, notice things that I try to both register and ignore at the same time.

Can see very clearly, that spending so much time nearly two years in bed, because of the deep pressure sore has been extremely bad for my body.

Spending so much time in bed has weakened me considerably; I shall never regain the use of my muscles in my torso.

They have gone for good now; all that time in bed has turned them from muscle to ‘pudding’.

I can no longer sit up unaided, if I try with Richie’s help, I collapse to one side or another.

Sometimes I feel like any longer and I would look and feel like a collapsed Yorkshire pudding.

These two years have been lost to me in terms of mobility, getting around, having interactions with people outside of our apartment.

I have made lots of friends in the blog world and think that without their support and writing my blog things could and would be even worse.

Feel very much that these two years have weakened me and given the MS a chance to move in even more.

Hope very much that what has happened to me will not happen to anyone else; hope that no one else will get such a deep pressure wound.

All because the people who organised and supplied me with my electric wheelchair did not make sure the wheelchair was the right size and provided adequate support.

Neither of those things was done and my feedback. reservations and misgivings were ignored and I was told to give it some time to get used to the wheelchair.

Well I did that and 5 months after I got the wheelchair I had a virtual crater of a pressure sore, which was 10 cm deep as a result.

Coming back from that is difficult and has taken all my strength and will power and endurance and does so every day.

Amazingly there is life after such an event and I am that ‘’comeback kid’’ who intends to enjoy as many moments as possible while I can and I do.

Ernst Ludwig Kirchner.

Devestating News.

Paul Delvaux.

http://en.wikipedia.org/wiki/Paul_Delvaux

Richie was just drying me after a very pleasant shower when he made a shocking discovery that the skin was coming off the spot where the wound had been.

We are both devestated by this, one minute we were happily discussing what I wanted to put on for Marianne's visit and the next Richie was getting his glasses to examine me more closely.

When he said he needed his glasses my heart sank into my shoes, I became really worried and was dreading what he would see.

When he said that the skin was coming off I started to cry as it was even worse than I had thought it would be.

I thought he was going to look more closely at the catheter as he had discovered a problem or he had noticed that I was getting patches of yeast infection due to the sticky heat.

Anything but this, no not this again but I guess this will keep happening as the spot where the pressure sore wound was will always be extremely sensitive.

And there will never be any guarantees that it will not happen again as it obviously will, guess the only conclusion from this is that I can not take anything for granted.

Seems that I did, but I am not going to give myself a hard time about this and demoralise myself just when I am so vulnerable right now.

The only thing I can do; is that I will definitely take every opportunity once it is healed to sit and roll around as soon as I can.

To not do so especially as it is the third time now that I have had to suspend sitting in my wheelchair.

What is more worrying this time is that there is no immediate really obvious reason for the skin coming off.

Previously Richie could identify the cause right away which was somehow reassuring, this time we do not have a clue.

Which is worrying for us both especially for Richie, hope we can work out what happened so we can be vigilant and prevent it happening again?

Hope that it heals up very soon and does not escalate any further and that Ton can come round on Monday to give us his advice how to proceed.

Writing the blog has helped me a lot, can feel my spirits lifting once more, it’s good to put it into words.