From Jooly

Dear Sandie fans,

Sandie has taken a rest from writing her blog for a while. I have spoken to her recently and she sounds really well. She recently celebrated her 60th birthday and it sounds like she had a fabulous time.

I hope that she'll write for us again very soon.

CUPID

Well! My darlings!

What do you think of 'our Julie' being painted for all to see for always?! A brave, brave woman - and I think I can see some sadness in her eyes; very poignant indeed.

MS is being made more public now, thanks to people like Jooly. It's so easy to sit back and think about doing something to raise awareness. But oh! So much harder - almost impossible! - to actually DO it! I know, 'cos I'm one of the world's worst offenders!

You may remember that in my last diary I mentioned CUPID - a trial to see whether THC, found in Cannabis, would help with pain and perhaps go some way towards slowing down the progression in certain types of MS, namely Primary Progressive and Secondary Progressive MS. Well, my lovelies! I am officially on the trial after several visits to the hospital and seeing gorgeous neurologists as well! AND! We are paid our expenses!

You would have laughed at my expression when I was confronted with the mental tests! Pegs in holes and out again with each hand and a mathematical test which defies any description I can think of without swearing!

I have problems with short term memory (as do many of you! ) so this really wasn't an easy ride!

Arf and me met up with a couple of people who were also starting the trial and soon we were having a party in the Dispensary. The next time we meet - in a week from now - we're having vodka cocktails and nibbles, so if you would like to join us in Norwich…!!!

To date, I've felt NOTHING at all when taking these pills, except for feeling less agitated and having fewer headaches, so I'm now taking fewer tablets for these troublesome problems. Of course, it may just be the 'placebo' effect, but if I feel better, I'm more than pleased whatever the pill holds in it's little capsule!

On a lighter note, Arf kindly dyed my hair for me and now I am really red! Not even "Ginge" could match this colour! I've told people that I went in the tunnel for my MRI scan with mousy brown hair and came out with it looking like a burning bush! Actually I LOVE it and I don't think I'll ever grow old gracefully! Needless to say, I've hacked my fringe and will wear a paper bag over my head when my hairdresser sees me tomorrow!

I have a feeling that good things will happen for us all in the next few months. The sun is shining. I have yet ANOTHER two appointments next week at the hospital to see young and very handsome toy boys (the neurologists!). Arf has settled down with the tablets for his Diabetes and is doing well. And this morning, a lovely lady phoned me about my place on their list for a self-propelled wheelchair! She's moved me to another list which gives me priority! You can't get better than that, now, can yer?!

Now! Off yer go on the web and take another look at Jooly! See ya soon!

Peace & joy

Well! Hello My Lovelies! What a Year!

I pray that the coming year brings you peace and joy! I have to say that this past year hasn't exactly been the best year of my life, but out of tragic events come new friendships and bonds with family! You all know that depression gripped me during the last 12 months and has changed my life. I have to say, for the better! Now! Isn't that weird? But I'll elaborate in my own unique way, if I may?

I've mentioned that I see a therapist once a week and she has enabled me to open a door somewhere inside me and let all the frustrations and baggage just soar up into the sky and give me some peace! I'm not saying that everything is perfect but that I have the power within me to deal with left-over 'trauma' from my youth! This lady is also a very beautiful woman both inside as well as out and her way of thinking has brought me to a higher understanding of grief, anger, sadness, coping with 'life', and my relationship with my lovely Arf! Now how brilliant is that?!

There is some sad news. My brother passed away just before Christmas from cancer (such a ravaging disease, isn't it?). But I had some private moments with him and have no regrets. There is a deep sadness in my heart that won't heal for a while but I can remember all the laughs we had at Christmases together and now he is in no more pain.

You've probably heard about a trial called CUPID. CUPID stands for CUPID stands for Cannabinoid Use in Progressive Inflammatory brain Disease. CUPID is a clinical trial which will evaluate whether THC, one of many chemical compounds (cannabinoids) found in the cannabis plant, might slow the development of disability in MS. It's taken orally. And guess what? I may be eligible to try it! I'll know more in about a month, so fingers (and everything else you can think of) crossed! The trial lasts for three and a half years, so I was asked if I would be here in the UK for that length of time (I may be thinking of moving abroad or flying to the moon!!). Do you think that was rather an "in the air" question?! Anyway, I received the information about the trial this morning. It makes for some light reading at bedtime!

When we had our extension built in the summer. We made friends with one of the builders and this has blossomed into a deep and very rewarding friendship for all of us. Now this is something that wouldn't have happened without my having MS. My mental wellbeing is something I now treasure and protect! Bless every one of you who have given me hope and encouragement. And take heart, my beauties! JJ's has been a cushion and a soft blanket for me for quite a number of years now. Should you need the same comfort, come and let it help heal your heart.

See ya next month or so!

OK to be angry!

Well, my lovelies! After last month's ramblings, I think you need something a little lighter from me and to know that I am healing from the inside!

One thing that has helped me is my admitting out loud that 'it's not fair, meaning my MS! I have never said this before about anything because I know and accept that life isn't always fair. My mum taught me to try and be content with how I was and not how I would like to be! However, I have an inferiority complex - always striving for perfection. So mum didn't quite get the message through to me, did she?!! It's OK to be wrong! It's OK to be angry! It's OK to cry! It's OK to be less than perfect!

Recently, I bought a book called 'You can heal your life', and this is a little sample of what is in it. "In the infinity of life where I am, all is perfect, whole and complete. I am always Divinely protected and guided. It is safe for me to look within myself. It is safe for me to look into the past. It is safe for me to enlarge my viewpoint of life. I am far more than my personality - past, present or future. I now choose to rise above my personality problems to recognise the magnificence of my being. I am totally willing to learn to love myself. All is well in my world." The book is not about God but about changing the way you think and so improving the quality of your life.

One sad thing that has caught up with Arf is that he is now officially diabetic. He has been borderline for a few years but his last test showed he had crossed over the normal blood glucose limit. He has to be strict with his diet and be tested again in three months! He is a tad scared but is determined to try and keep from taking tablets. He already takes tablets for high cholesterol but his blood pressure is fine! Neither of us can say the same thing about his brain!!! I decided to buy some designer frames for my glasses using the internet (cheap!!!) and asked Arf to read out my prescription for each eye. He found what he thought were the readings and I typed them in on the questionnaire so my lenses would be correct for each eye. Well!!! It only turned out he was reading the figures from our electricity bill!!! [Jooly laughs out loud!] AND! They seemed to fit in all the right boxes too! I don't know who is more bonkers - me or Arf!!! YES! Definitely Arf!

You'll be pleased to know that my wet room is now in use and I love it! I have a little lobby as well so making our very small bungalow - just a small bungalow! I've even brought my exercise bike into it! Haven't tried it yet 'cos Arf will have to tie me on securely first! I'll let yer know how I get on! Meanwhile - you all take good care of yourselves!

A little miracle

Hello, my Angels!

Well! What do I say?!

I am in the middle of the darkest place I've ever been and it's like the top of a bottle of soda has flown off and let all my hidden demons out at once. I will be brutally honest because that's the only way I know how to write - to pretend would not help me nor anyone out there suffering a similar trauma. I have no idea what triggered this off - one morning I woke with what felt like a headache over my whole body and I just wanted to go to sleep and never wake up again. My self-worth was nil. I felt useless and I saw no future for me and Arf - except my making him more unhappy. I was in tears and tried to get to the painkillers (of which I have many different ones collected over the months!). Arf grabbed hold of me but I already had a load of pills in my dressing gown pockets. He couldn't control me.

I was lashing out at him and crying out for him to let me die. So he called for our neighbour and she told him to call the emergency services. I don't remember in detail much of what happened next but the police and an ambulance as well as my doctor arrived and all I felt was that they were invading my space and I screamed at them to go away. Eventually, I calmed down enough so everyone could go away except my doctor. She phoned an Access Group (professionals who deal with troubled souls and come to your home). 'Paul' arrived and said that he couldn't stop me ending my life when he'd gone but he could have me 'sectioned' (detained under the Mental Health Act) if he thought it necessary.

Now that really scared me and I went very quiet. Arf put me to bed and my doctor made sure he was OK - after all, he had just witnessed his wife wanting to leave him as such. Paul came round the next morning and talked to me. I trusted him. He gave me some leaflets from groups who were Christians like myself and had councillors who only took a nominal fee. I went to see one of these amazing people and after an initial chat she suggested I come to see her each week and talk about all my guilt and hidden anger. Her eyes were so blue and I felt she could see into my heart. I am still very fragile but I now have a life-line.

Think about it, folks!

All these people wanted to help ME - no-one else, just ME. I have to let them do this to get well again and to start to like or even love myself before I can move forward and deal with my MS. If you have found this upsetting, I am so sorry. The GOOD thing is that I am still here and I think I will be able to let down the barriers slowly. No-one wants others to see themselves crying and out of control, which is why it is so important to talk to someone if you need that comfort and reassurance.

Writing my diary is like a little miracle because I know some of you will identify with it and this lights a candle inside me! Now! I shall be back to waffle on again next month and bore the pants off you all, as usual!

Hot pink

Well! Hello, my lovelies!

I haven't had the best of times since I last wrote.

I'm still fighting an exacerbation and just as I thought I was winning, a beastly, snotty, coughy, feverish cold took hold and it's taken over two weeks to get it under control! I've got shares in cough mixtures and tissues - I never thought I could have so much rubbish in my nose! Sorry! This is gross so I'll talk about another fight me and Arf have had lately!

I think I may have mentioned at some time that we needed a Disabled Facilities Grant from the Government to build a bathroom for me. Doesn't sound too difficult, does it? Now, all you veterans of the UK welfare benefits system will be nodding your heads and saying to yourselves, "Oh! Yeah! We know!".

A lovely guy come to design the bathroom extension and a person from the Council visited to agree on a price! I loved the designer but detested the woman from the council! He treated me like I didn't exist! Why couldn't we carve up our tiny home and use our second bedroom as a bathroom, she wanted to know? If we'd agreed to that we'd be left with one bedroom and a living room plus a kitchen and TWO bathrooms! And neither of the bathrooms would even be en-suite according to his specifications! This was not the solution we were hoping for!

When the Council woman left, the designer, said "Cor! She got out of the wrong side of the bed this morning, didn't she?!". My first thought was to give up on asking the council for help. But on hearing about my unhappiness with their suggestion the Head man from the Council and his underling decided to come and have another look.

This second visit was even worse! No "Good Morning"! No smile! No shake of hands! I was furious! My Social Worker Occupational Therapist and her boss came round to try and pacify me but I was full of cold and spluttering everywhere and in no mood for discussing the bathroom any more with anyone! Arf and I have now decided to try and raise money to get the extension done the way we wanted it through 'equity release' on our home. We are waiting for a valuation and hope to meet the bank's criteria.

I've still got this blinkin' cough and runny nose, although it's now much less aggressive. One good thing, though! I ordered a set of Egyptian cotton towels from Bid-Up TV in 'hot pink' and they are delicious! Oh! And TWO handbags (nothing to do with a bathroom... just 'because'!). One of these is in 'hot pink' too and you can't help but adore it! So, all is not lost - except my temper with the Council! Now it's sunny and I've just devoured a huge Danish pastry! Look after yourselves!

Senior moment

Hello everyone! Had a good Christmas?

Well! I want to wish you all a peaceful and happy 2006! I've been off colour for the past few months. Nothing drastic, but a tad depressed about the future and how many years I may have left with my husband Arf. We've been married 23 years and it seems like yesterday - another 23 years and Arf'll be almost 90 years old! So! It's important we make every day count, yes?

Oh! Talking of age! We both had a wonderful senior moment the other day and at the same time. I'll yell you what happened! We found a shopping channel on the television called Bid-up TV and its sister, Price-Drop TV . These channels can become addictive while you're waiting for the main news of the day to come on around 6pm! I saw a watch I liked, and it was so cheap I felt I just had to have it. So I rang the number and was told I was a lucky caller and they would call back for details of payment! Well, they did and Arf answered the phone! He didn't have his glasses on and when they asked for his credit card number, he couldn't read it so passed the phone to me. I read the details out.

Now! This chappie on the end of the phone wasn't English and his accent was somewhat difficult for us to understand! I misheard what he was saying and thought he was offering me a carriage clock. I kept saying that I'd bid for a watch and didn't want a clock! Finally, Arf took back the phone. It turned out I was being told the carriage cost and the poor man taking my order was practically tearing his hair out! So! Arf can't read and I can't hear, nor have a sensible conversation!

I can already hear you saying "What's new, then?!" The travesty is that the vodka bottle wasn't even in sight! See you next month. Take care of yourselves! Sandie. xxxxxx