First response..............and update.

I never expected Sunday to turn out as it did. Things had been going well for too long, and then life slips a Joker in the pack.

I'd just finished washing Cag and was about to get some fluid into her when I sensed there was something wrong. I looked at her, her eyes rolled up, her head went back and she had a fit. It lasted only a few minutes but in that time a paramedic was on his way.

Another few minutes and he was in the room with me. He began to check her over, then she went into a second fit. This time she did not recover and continued shaking until the second ambulance arrived. Then it was a dash to R.C.H. Truro.

I spent the afternoon with her in A & E but by then she was so drugged up to control the fit, I could do little but watch and wait. I got home about 6pm, just in time for a telephone call asking me to come back to the hospital. I expected bad news, but it was to go over the results of a CAT scan,then to update the doctors in the Medical Admissions Ward on her history, and what had actually happened.

There was been no obvious reason as to why it had happened. It could well have been caused by M.S, but other tests are needed to rule out all other possibilities.

Our daughter travelled from Torquay today and came with me to the hospital this afternoon. Cag's condition was no different from that of last night, but she was breathing without oxygen, and her colour was a little better. The Staff Nurse said she was showing some responsive signs but was still suffering the effects of the drugs given on the previous day.

I went back to the hospital tonight. Her eyes were open, but still only just conscious. She did, however, managed a few words, to complain about the noise the bedside machine was making. A more than positive sign and a good first response. She understood what I was saying and I even managed to get a smile before I left.

It will be a day or two yet before the damage that the fit has done can be fully confirmed. Hopefully her few communication skills with have survived but we must be thankful that she is here at all. It was that serious.

Sorry I can't finish on a more light hearted note tonight, but there will be other nights, and at least the few steps were in the right direction.

UPDATE............

It's taken 48 hours for the drugs to clear. Cag is responsive now but her speech is almost non-existent. The seizure seems to have done a lot of damage to the communication skills. The doctors are happy that they have done all that is possible, so they have started the procedure to get her home again. The sooner, the better............ for both of us.

I've done quite a bit of reading about what happened and it is not uncommon for this sort of seizure to go hand in hand with M.S. It may be a 'one off ' but it can be the start of more regular attacks. It's a case of wait and see.

Thank you for all your comments, they are truly appreciated.

Ahhh....choooooooo!

I've been fighting off a cold for the best part of a week. The usual sore throat, irritating cough, not feeling too bad during the day, but really making it's presence felt in the evening and at night. Cag doesn't seem to have joined me, a good thing, but I have been careful and tried to keep it all for myself.

Today has been a flap. Contacting nurses, waiting for them to get back to me, visit from a Physio, and then a further visit from one of the Community Nurses when I'd all but given up on her calling. Cag's been having problems with the actual PEG. Because it's an open wound, it wants to heal, and sometimes does this too well. Over granulation is the term. Easy enough to deal with, now I know what it is.

Not much help from the Physio I'm afraid. We are doing just about all we can, and just to stay where we are, swimming against the tide, is some form of progress. She's going to check with our doctor, to see if an increase in medication might help to loosen the limbs to allow more exercise. It's worth a try, but I'm getting very little response from Cag, as if she just can't be bothered. I wonder whether I should?

I go to pick up a new car tomorrow, a free one.............. I jest. It's supplied as part of Cag's disability package. She is entitled to a mobility allowance and that takes care of the lease on a car. I asked what car she would like and she said 'gold', so a gold car it is and I get to choose all the technical bits. A French car, made in Spain, with a German engine, and Cornish dice hanging from the rear view mirror! European co-operation at it's best!!

Thoughts and considerations............

I've taken advantage of the good weather over the weekend, to get out into the fresh air, do some walking and some thinking. I took the opportunity to walk around the estate, the hard way, through the fields now that the harvest is in, and was greeted by thousands of tiny, pale yellow, meadow violets. They had been hiding in the wheat. Now the sun can reach them, they, like me, were enjoying a beautiful day.

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So, what about the thoughts and consideration, and the decisions I mentioned in my last post. To Blog or not to Blog.......... that is the question. I must write, at least sometimes. It's what Late at Night was all about. Something for me............... and I need 'me things' in my life. That not being selfish, more practical, somewhere to unburden myself when things get a little strained.

I'll use Lighthouse as well, to post a few pictures and perhaps a few items that I find amusing in the press or come across during the day. One today was a Council who spent £5,000 on special notices in Braille to inform the blind what shoes they should wear when they play squash. The next time you see a blind person playing squash, please let me know!

It's going to be a long Winter, and it doesn't look like there will be very much contact from what remains of our family. I doubt whether Cag is going to be able to do very much in the way of travelling before Christmas, if then. So our life will become even more isolated, the way of most people dealing with a form of disability. She doesn't appear concerned, and seems to be happy in what she is doing, so I must leave it up to her to decide when she wants to rejoin society.

As for the economic situation the world is involved in, I'm not worried. I have enough money to last me for the rest of my life. Providing the end of the world is before next Tuesday.

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Serious considerations..............

From the few other Blogs I read, I see that several others are in the same sort of situation as myself. The 'Shall I?' or 'Shan't I?' situation. It's not the Blogging doesn't 'do it' for me anymore, it's because other things in my life have move up the priority ladder, and my thoughts and attentions have been travelling in their direction. So serious consideration is called for about where do I go from here?



I accept the situation we now find ourselves in. I'm not disappointed for myself. I can find joy and laughter in the simplest of things, but I am saddened by my wife's condition. I'm sure with a little more fight, things could be so much better and more interesting for her, but there is no spirit there, just a greater acceptance than mine. So this is the best it can get, unless a miracle ............. ah! a good old miracle. That's what we need.



The good news is, the Remoska is brilliant. Another week of running the freezer contents down, then I should be able to use it every day. I roasted a selection of vegetables last night. The best I've ever tasted.................................

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.................................... not quite finished, but you get the idea.

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A moment of madness and I baked bread this afternoon, my first attempt. No, I haven't tasted it yet. That event will be at breakfast tomorrow. It's a shame that Cag can't get involved, but she shows no sign of being even slightly interested. It's beige goo for her again tonight.

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Back to the original subject, where to go from here. Perhaps a clear out, re-naming, a new direction??? Re-invention, is that the answer? Others can do it, so I'm sure I can. Yep! A time for serious consideration.

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UPDATE..........

The bread could have been a little lighter, but I know where I went wrong. It's still very edible and no worse than some I have tasted from our local Supermarket. So, if at first you don't succeed ............... you know the rest.

Where have I been?

Last published September 7th....................... I know, I should be ashamed of myself. I, like so many others, seemed to have found myself in one of those 'looking for something new' situations. My life, since my wife returned from the hospital, has settled into an easily managed routine. The only addition to our needs has come from a neighbour who's husband has had a major bowel operation. I've been taking her shopping twice a week, and lending her an ear, oh boy, have I been lending an ear!

I'm accepting that probably now is the best that it will get with Cag's situation. Not quite in the 'last stages' of M.S but any setback now could be very serious. I don't think she has the strength to fight anymore. She has not given up and will not give up, but there is only so much a person can take. Perhaps the next dealer will bring more luck.

I've set myself a challenge. To cook with a Remoska. ( I can hear the question from here! Try Google). I've known about them for years and recently a few neighbours have 'invested' in them, with varied results. Most swear by them. Another used it once, blew the fuse, and plunged his home into darkness. He over filled it, it boiled over, and he has been afraid to use it since.

I mentioned that I was interested in one and he gladly offered me the whole kit, with two unused recipe books, for well under half price. I reluctantly agreed. I've taken it to bits, checked it over, and now it's ready to go............................... and after a weekend of scanning the Net, I will be too.

I find myself in the same situation as many single and elderly people, now that I only have to look to my own needs for food. I have a good breakfast, but I only have main meal during the day, around 6.30pm. I've been through the packets, the tins and the prepared meals over the last few months. Now I need to stretch myself, and get back to the joy I used to find in cooking. I look forward to it.

Note. Must watch Jamie Oliver next week.

Nearly a week.........

It's been nearly a week since I last posted, a week of ups and downs. Generally, we are both fine, but that's not to say there haven't been problems.

The main difficulty this week has been Cag coughing about two thirds into her feed, around five in the morning (I feed Cag over night). I thought it may have been due to the different formula, one that she had tried in hospital, upsetting her, but I am now of the opinion that a ten hour feed may be too long.

I split the feed last night. I had to stop the feed around 700mls, flushed, then let Cag sleep for a couple of hours, and restarted the feed around 8am for a further two hours. That still left about 100ml short but I put that in manually with a syringe later. It seems to work, but I will check it out with the dietitian first thing in the morning, just to make sure it's O.K.

We had a visit from the PEG nurse this week. It was her first time in the area, so she was late, not being able to find us. She told, and showed me all the things I should have been instructed in while Cag was in hospital, so I'm a lot more confident in the whole system now, providing we can get this coughing sorted out.

Wednesday saw a visit from the outlaws, two of Cag's sisters. They came baring gifts, red wine and sticky coffee cake............ the perfect combination............ well I thought so! They hadn't seen her since she left hospital and were full of praise about how well she looked. Her skin is so much clearer and her hair shines, but not with hospital gained grease. Her colour is also very much better, with even a little rosiness in her cheeks. It's wonderful what a couple pints of beige soup and H2O can achieve. Wonder If Gordon Ramsey knows?

As for the rest of the problems, the pressure sores are on the mend, and I think I am going to have to accept that the limbs are never going to be as they were. We must make the best of what we have.

Sleeping on two feet..........

I've been expecting all sorts of verbal chastisement for my failure to post since August 22nd. No excuses, I've been about, but have had very little to say about the last couple of weeks.

We've settled into a rather confused routine. Confused for me because doesn't seem to fit my body clock, and confused for Cag because she really doesn't know what is happening at times.

I am disappointed about the physical condition Cag was sent home in from the hospital. The retraction in her limbs is causing problems with lifting and shifting. Hopefully a little bending and stretching will gradually put this right over the next few weeks. Cag is also suffering some skin deterioration around the base of the spine. Not quite pressure sores, but could easily become so if not treated. Hence the sleeping on two feet.

Our Community Nurse has supplied an inflatable pressure mattress for Cag, which takes up over half the bed, and the 'two feet' is all that is left for me. It's back to dressings three times a week, but I feel happier having the closer contact with the nurses, especially in these early days.

Everything else seems to be working out O.K. Cag's put on a little weight, about 2lbs in the last week, and that's fine. The feed has to be adjusted. A little too much fibre, if you get my meaning, but that's very much trial and error. Apart from that, she's looking fine. Hair shinning and skin clear, with a good colour. Must be the beige soup.

One of my neighbours did leave me speechless a day or two ago. I mentioned about the beige soup that Cag was on, to which he replied that I must be saving a fortune, not having to buy food by getting it by prescription!