catastrophizing

31/5/2016

This is my second attempt at my new post because the computer suddenly decided I need windows 10 despite my saying no thanks for weeks, so here I go again.

Catastrophis(z)ing isn't an easy word to write or say, but it's definitely easy for me to do all the time for example; I have had poor circulation in the last few weeks causing my left foot to look a little bluer than my right.  What is my first reaction? I'm going to have my left foot amputated.  Is that normal I ask? I'm sure most people would just ignore it and go on with their lives or shake the foot to get the circulation back , but not me. I'm looking it up on medical websites and books I have acquired over the years. If I have a little pain in my stomach it's probably trapped wind but I visualise the ambulance at the front door waiting to take me to the hospital to have my appendix taken out.

As you've probably guessed by now, I'm not good with medical stuff. 

I had a good session with my counsellor this morning and he told me to mix things up a bit change my routine to get back my control over my life instead of the routine controlling me.  It doesn't have to be anything big; something as small as brushing your teeth in a different order can change things up a bit so that you don't become a slave to the routine.

I shall give it a try.  If you give it a try let me know if it made any difference to your thinking?

Bye

Weighing

30th May 2016

Nearly every person I speak to and especially professionals say not to weigh yourself every day.  I could never see the sense in that, because I couldn't understand what difference it made what you weigh from one day to the next;  I just wanted to know if it was going up or down.  But now I can see the sense it is especially with  a dodgy pair of scales like mine.  I got really happy when my scales said I'd put on another quarter of a pound every day for three days; and then when I got weighed at the doctors there was no significant change, so I was a bit deflated.  If I only weigh myself weekly then I don't get too emotional about it one way or the other.  It also helps when you're speaking to concerned friends when one day you tell them that you've put on weight and the next time you say you've lost again.  So I'm not doing it every day now. It is tempting especially when I'm waiting for the shower water to warm up, but I'll resist.

Please feel free to leave a comment on how you or someone you know is handling their swallowing problems.

Bye for now

Onwards to a new era

I've just had my last meeting with the psychiatric nurse. They feel there is nothing more they can do for me.  I've officially been discharged, but the nurse has given me her home number and said she will accompany me to an E.N.T. exam as she knows how panicked about it I am.  I still haven't had the appointment yet though. And the psychiatrist said I can contact him if I feel the need.

I had a dramatic dream last night.  A bit like a crime drama series I was being driven in the back seat of a car with a man holding a gun at me. Apparently there were 2 of them but I had managed to shoot one of them and had his gun and was pointing my gun back at the guy.  Then there was another car parallel to us with more guys with guns pointing at me, but they were on a different road and I distinctly remember thinking  'they should be going the other way'.  then we were in a shopping mall and I was trying to catch the attention of the waitress to ask her to warn the police.  You want the next episode now don't you.  So do I.  I woke up with a spasm in my leg then, so I don't know what happened.  I tried going back to sleep but it didn't work.  Wonder if it means anything?

My doctor is away next week, but he said he was going to France and there is a shortage of petrol there right now due to strike action so I wonder how he'll get on? So I won't get weighed next week.  I've stopped doing it everyday now and will do it less often, as it's not that accurate anyway.  If only I could eat ice cream and chocolate which I love; I'll definitely put some weight on then.

Bye for now

Feeling down

25/5/16

Feeling a bit deflated today because when I saw my doctor yesterday for my weekly weigh in, there wasn't any change and I thought I had been putting on weight.  I thought I'd put on at least 3/4 of a pound.

I had a good session with my counsellor in the morning which gave me a little hope only to be dashed by my doctors appointment in the afternoon.  I don't know if this  is EMDR or not but I walked backward on my life line thinking of all the bad anxiety and Fear giving moments in my life, and then I walked forward through them again with my guardian angel on one side and a trusted supportive friend on the other helping me back to now and I carried on walking with this newfound belief that I could face the future with my 2 companions.  It helped me a lot and I am definitely swallowing more quickly now.

Has anyone else experienced something like this or EMDR?

To blog or not to blog that is the question

23/5/2016

Put on another 1/4 pound today so I'm now 5 Stone and 11 lbs. exactly according to my dodgy scales.

I feel tired now thinking of all the things I have to do.  I haven't tidied anything for months not that I'm exactly house proud, but  I have so much mess everywhere that if a burglar broke in they'd think they were too late;  someone had beaten them to it.  It's 3.30 pm and that's not a good time for me; my tired time of the day (well more than usual).  so I don't think it would be a good idea to try and work on my tax returns now, but then I'm too physically tired to do anything physical.  So you win some you lose some.  I have washed the bedding today so I'll have to conserve my energy to making the bed again tonight before I can get into it.  I didn't sleep well last night kept waking up about every hour and looking at the clock.  it's a spiralling downward circle you're too tired to do anything and then there's more to do and then you overdo it so you can't do anything anymore  and you're beat.

That's how it is with M.S.

I am a virgin blogger, so if anyone has any tips for me please leave it on the suggestions page

thaks

Bye for now

Dreams

22nd May 2016

I'm hovering over the 11 lb. mark now .  Think it may be to do with the Lasagne I ate yesterday.

I keep a book by the side of my bed with a pen to write my dreams down as soon as I wake up, because if I don't do it then I will forget it.  sometimes I forget it straight away.  I used to have very vivid dreams that had obvious meaning like when I was studying for my 'O' levels I used to dream I was being chased by the Nazi's or the Daleks and I was enclosed on all four sides by steep walls, with no way out.  Obvious anxiety about the exams.  Now I mostly dream of food and drinking and being back in a place of learning.  I guess we're all in the school of life and every day is a learning day.
I also daydream about being strong and healthy.  Saw the Disney film 'The Pacifier' yesterday.  Van Deisel played a baby sitter to a family of kids who had lost their father, and the mother was abroad trying to find out what happened to him (I could have got that wrong as I missed the beginning).  I wished I was as strong and confident as Van Deisel in the film.  It was a real surprise for me as I usually think of Van Deisel in war films or guts and glory type things. It shows you that people can change (O.K. I know it's fiction but it's a dream).  I bet he doesn't have any problems swallowing.

Bye for now I have to do some ironing if I have the strength.

Just the opposite

21/5/16

Hi again

Put on 1/4 of a pound today.  Wish I could do that every day.  Even better, I wish I could swallow normally. I love Ice cream and chocolate, but all dairy products increase my mucus which makes it difficult to swallow again.  It's funny how most of the world seems to want to loose weight while I'm just the opposite and it's not like I can just eat what they've been eating because I can't.  there should be a swap system where someone could give me some of their excess weight.

By the way, the prayer post the other day was loosely based on the reading from the Bible about putting on the whole armour of God.  The reading is from Ephesians Chapter 6.  Not sure how much effect it has on me, but I do it habitually now like brushing my teeth.

Bizarre day

20th May 2016
As you know yesterday I was expecting my house group (that's a small group of 4) to turn up at 10 am. to watch In the footsteps of St. Paul on my TV, but no-one turned up and at 10.45 I phoned to discover that it's supposed to be next week.  So I tidied up (as I would call it) for no reason.  Then in the afternoon there was a dash to go to my place of work; the nursing home to pick up a letter telling me when certain money had been paid into my account.  Well the one who writes the cheques was there and called me aside to explain, so I didn't have much time to dash to the supermarket to get a birthday card for my niece and flowers for my retiring Psychiatric nurse. After dashing back to post my nieces card I waited for the nurse to turn up and she didn't turn up either.  I swore we arranged yesterday for her to come after 4 today.  She said she'd be late, but it's not like her to not turn up at all without phoning or getting the office to phone.  Then I got really upset and anxious trying to sort the cheques out as I have to fill in a tax return and though I don't earn enough to pay tax, I've still got to get it right. I didn't calm down till my husband found our missing bank statement and I'd taken a diazepam.

Needless to say I didn't sleep very well again last night.  I think I was also a little upset because of the knowledge that I'm running out of help. for my swallowing problem.

Good and bad news

19th May 2016

Hi again.  good and bad news I suppose.  Good news in that I got weighed and have put on enough to keep me out of the hospital, again this week, but my liver is looking dodgy, but it has been worse before.  The bad news is that I have been discharged from the Psychiatric unit as they say there is nothing more they can do for me and the nurse that was seeing me on a weekly basis is retiring so I have my last session with her today.  I don't think I have time to get a bunch of flowers (we'll see)  but I do have a thank you card already in the house to give her.  That's a great shame, but I expected it
in a way as she'd run out of things to do with me.  So all I have now is my weekly weigh in and regular blood tests with my doctor and my counsellor, who is trying a technique called EMDR I know the EM stands for eye movement, but I got lost on the DR bit. I believe I did one proper swallow of water last night, just before bed. I was hoping either to start swallowing properly before my appointment for an Ear Nose and Throat test comes up so I won't have to have it because it terrifies me, like a real phobia or I was going to ask my nurse if she would be able to come with me. The first is obviously the best option.

I've had my porridge and Fortecreme today and it's now 10.30 am.  I was expecting our house group to turn up to see on the footsteps of St. Paul on our TV but they haven't turned up yet so maybe I've got the wrong day, but it's given me a chance to do this.  If they're not coming, I could go and get the flowers.

Bye for now

Off to the psychaitrist

18th May 2016

Well I've managed to dodge another bullet and been kept out of hospital for another week.  My weight has gone slightly up, but I'm still not eating properly, so it's slow going and a long time to eat.  I just spent 3 minutes on the loo which is a record time for me;  it's usually more like 23 minutes minimum.  My blood test was O.K. , but something in my liver is high but it's been higher before, so I have to go back again next week for another weigh at exactly the same time on the same scales.

It's a question that's always asked when you go to the doctors or specialist with a problem.  it's always 'when did it start/' or 'how long have you had it?'  that's not too bad if its just a few days but when you have to go back in time to when my eating started getting worse, I can't pinpoint it.  It's like we all need computer memory chips in our head to recall every detail of every day of our life.  My brain doesn't work like that.  My music teacher at school once gave the best report I ever got .  She said I was erratic. Probably the most accurate description of me ever.

I have a follow-up appointment with the psychiatrist at 10.30 today. I don't have a great deal of faith in him, because he doesn't do talking sessions , he just prescribes medication and palmed me off with the psychiatric nurse.  We definitely need ore regulated counsellors and psychologists on the NHS.  Who knows what counsellor  to pick and who can afford them?

Why am I seeing a psychiatrist you ask? (or maybe not).  Well it's because on my second trip to the hospital for rehydration.  I had a video fleuroscopy (I think that's how you spell it) basically it just x rayed my swallowing from the side and the result was that there was nothing wrong with my swallow so then it was decided that it was all psychological. The won't know really for sure till I have an ENT appointment which I am dreading, but as there's such a long waiting list for that I'm hoping I will be cured before so I won't have to go.

So I'm off to see the psychiatrist now.  My husband is driving me as I've just taken a diazepam.

Bye all

Keep well

prayer

17th April 2016

Just woke up but my husband got to the bathroom first so I have time to write this and pray. Every morning, before breakfast if I have woken up early enough I read a little section from the Bible and then pray.  I usually pray my version of the protection prayer which goes something like this. Lord I pray for the Helmut of salvation on my head that your holy spirit will guide and guard my thoughts throughout the day and  thank you for continued protection and healing of my M..S. and thoughts; especially on swallowing and the mucus.  I pray for the breastplate of righteousness to protect my heart and chest that I may be cloaked with Christ's righteousness not my own which is as filthy rags in your sight, and I thank you for continued healing of my heart lungs and forgiveness of my sins. I pray for the belt of truth round  my waist that I might know your truth and be set free. That your holy spirit might help me to remember your word which is truth in all situations and have the strength to apply it.
I thank you for continued healing under that belt of all my inner working parts;  stomach, liver kidneys, bowels.  I pray for the shoes of the gospel of peace on my feet that I might know your peace which passes all understanding and be your peace wherever I go.
The sword of the spirit in my hands to know how and when to fight off the attacks of the evil one and the shield of faith to protect me from his fiery darts.  Lord I believe help my unbelief.

I may pray a little in tongues and then have a little silence trying to listen but at the moment I don't usually get much; occasionally I will get a scripture or a picture, but not today.

I also prayed about my doctors appointment later and that my blood test from yesterday has come through and is alright. I know it seems long but it doesn't take much time really.  At the moment I am reading through the gospel of Luke and Acts.  Just a couple of verses a day.

I'm glad I have this blog to share this with you all.  Will let you know what the doctor says after I see him maybe in tomorrows blog, because I'm hungry now and want my porridge.

today is all that counts

16th April 2016
I was thinking this morning that what you did years ago doesn't matter anymore.  Unless you're Elvis or someone famous like that no-one cares or remembers.  It's what you do today that counts. I'm friends with a 107 year old lady.  I've written a short story of her life because I found it interesting.  She's seen two world wars, was born in poverty in London; nearly ended up in the workhouse; had to testify against her father in court when she was 15 and had her second baby during the blitz in  London, but who wants to read her story? All her friends are dead now and she is really alone except for her family and they are getting ill and old now too.  I used to dance performance dance dramas in the church, but because of my disabilities now, I haven't done it for so long that only a few remember.  None of the new members of the congregation even know.  Now I just arrive late and leave early because I need to get back home to eat something or drink what I can.  I'm a bit housebound.  Still I can now do this blog and that's what I am doing today.  tomorrow I may find out how to put a photo onto my page

First blog as Problem Swallower

Hi

This is my first post on my new blog.  It is for anyone who has problems swallowing  i.e. (Dysphagia).  It will be shared on the M.S. Trust website, but it's also for anyone with the same problem

 I was diagnosed with M.S. Dec 2012 Started Disease Modifying drug Copaxone the following July for a year, when I had a bad reaction to it and came off it immediately. I was offered tablet alternatives but I have now developed dysphagia. I have gone from a reasonable 9 stone to 5 stones 10 pounds in about 6 months. I find it difficult to eat all the dairy products that they tell me will help put on weight because I also have very bad mucus which adds to the swallowing problem.  Fortunately I live at home with my husband who is a great help to me.  He does all the food shop, most of the cooking and washing up and occasionally helps with the ironing.  We have been hoping to have a new kitchen for about 3 years now, but this problem has put it on hold.  My last visit to the doctor on Tuesday gave me one week to put some weight on, he says before he will have to admit me to hospital.  He doesn’t want me to have a feeding tube as I can swallow but only very slowly, and he thinks it would be detrimental to my swallowing abilities to have a tube or peg.  So at the moment i am sitting on the sofa all day (not allowed to exercise as it burns calories) trying to eat and drink all day, as long as they aren’t dairy, too thick or too thin liquids.  I eat 3 Fortecremes a day and try to drink half a Fortisip. I always have porridge for breakfast, but very rarely finish it in about 1 and a half hours and try to eat a kids meal of chicken and mashed potato with veg and always scrambled egg with one slice of toast (the crusts cut off, of course).  so it’s getting a bit boring now. I’m thinking of trying Wiltshire Farm foods small meals.  Oh well I have to sign off now to eat another Foretecreme and then its scrambled egg again.

Bye for now