Friday, 20 September 2013

A Little Bit More About Me.....

 

 
 
Thank you all so much for all your lovely comments and support. I seem to be saying that a lot just lately, but it's true you really are such a supportive community.
 

 

 
 
I thought perhaps I ought to explain a little bit more about me, and why I get so tired at times, and why my body doesn't always behave itself! Explain that I'm not really a Moaning Minnie....although I've felt like one this week!
 

 

 
 
 
In 2010, I was diagnosed with Multiple Sclerosis. MS is a condition that affects the central nervous system, namely the brain and spinal cord. Gradually over time, 'scars' form in the CNS, this affects the way messages are transmitted through your body. The messages get blocked by the scars, it's a bit like a bad phone reception, you only catch part of the conversation. Your body only responds to part of what you're asking it too.
 
MS is an incurable, progressive disease, very little can be done from a medical point.
It can be very scary when you are first diagnosed. My first introduction to MS was loss of sight, not brilliant when you have a newborn baby to look after!
 
 
 
 
 
I'd be the first to admit how black it all seemed at first. It's a very unpredictable condition, I'm a control freak, it's in my nature.
Perhaps that's why this came along, to teach me to live in the moment. Accept I can't control everything. Start living in the moment, rather than always planning and looking ahead!
I'm not sure of this of course, but I am the kind of person who tries to learn from life's experiences, so this approach really, really helps!
 
 
 
 
 
 
So armed with my diagnosis, and very little support from any medical services, (no dig intended, there is very little known about MS!) I did my own research. This is another thing I do, tackle things head on. I wanted to do something to help myself.
I came across a lot of MS sites, they frightened the living day lights out of me if I'm honest! All very bleak! Luckily I came across a site which looked at lifestyle, and how diet, keeping active, and vitamin D can help manage MS.
 
 
 
 
 
 
It really was a God send! There's a lot of hope in this site. All based on medical research, not false hope. So that's what I did, changed my diet, took vitamin D, managed my stress levels better. I could inject myself each day with a drug, to try and slow down its progress, but at the moment I want to try and do things as naturally as possible.
 
 
And it's really helped. It's meant giving up work, which was right for me, but not good for our finances. I do however believe my girls would rather have me around and healthy for as long as possible, rather than holidays abroad and a big house!
 
 
If anyone's affected by MS that you know, I would recommend looking on Overcoming Multiple Sclerosis site. George Jelinek, who's designed the lifestyle plan, is a Doctor living with MS himself. The research is put across without too much medical jargon, which is what I need!
 
 
And so I try and live each day at a time, not get too concerned about what the future holds, after all none of us knows that do we! I try and keep as healthy as I can, when I'm tired I rest. A sense of humour helps too!
 
 
I try and keep my soul healthy by being creative. Creativeness equals Happy, don't you think?!
 
 
 
 
 
 
I'm very happy. Nothing to feel sad about.
 
 
'In the storm she stood, and when the wind didn't blow her away, she adjusted'.
 
 
I've adjusted.
 
 
 
Very random photos here, sorry about that, it's all I had to hand! I've popped lots of fabric bundles in my shop.....wallpaper packs to follow.
 
 
 
Hope you all have a fab weekend! Think I'll be taking things easy, really wanted to go to Yarndale, so if youre going enjoy yourself, and take lots of pictures so I can have a good drool over all that yarn! Hopefully next year!!!
 
 
Bye for now,
 
 
Ada :) xxx
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 

100 comments:

  1. Ada, How brave of you to share this with your readers. And what an admirable attitude you have taken about your illness. My sister in law, and my doctor, have MS so I know a bit about it. It is different for each individual of course. Being creative and listening to your body are great help. Sending you many hugs. Minerva x

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  2. sending you much love.
    I've found Mindfulness helps a lot- to do, and be with what you do fully.
    And it sooo helps to go with the way the wind blows- regret is SUCH a drain on energy!
    You're an absolute star!
    xx

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    1. Regret and what ifs are very energy draining and as I've not got lots I don't want to waste it! Thank you Elaine :) x

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  3. you are amazing Ada!!!!
    thank you for this post and its positive message!
    xxxxx Ale

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  4. the more I get to know you the more I stand in awe! Ada you are an inspiration and I am so pleased you shared this as in blogworld its all to easy to look at the lives of others edited within the walls of beautiful posts and then beat yourself up for the life you lead. Its wonderful to find posts where beautiful souls are generous enough to share the beauty around them to inspire us all but are also not afraid to inject some honesty as well...so we realise we are not alone! Your blog did this for me a long time ago, as a creative person struggling under laundry, trashed house living, padded rooms, 3 glorious but little kiddies one with a rare syndrome = no sleep...extreme behaviours and self harming, and coming out of a long depression after my angel's diagnosis i was at a point where I just didn't measure up anywhere to the beauty in blogworld, the beauty and ease of other people's lives! I was at an all time low....your blog was a the top of my reading love list, and then you suddenly shared some challenge.....you reached out and spoke of your own challenge! Really i do not have the words to tell you what that did, the injection of hope, the claiming back of my creativity and laughter, the moving on! To realise that the beauty you create with your hands, in your home and in your soul with your kids is born amidst the challenges you have dealt is so very precious and hope-giving...more beautiful than anything I could ever find on any 'perfect lifestyle blog' . This post touched my heart again this morning, thank you xxxxxx

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    1. Thank you Jane, it's easy to think everyone else has a much better deal than the one we've been dealt isn't it! I always think there are those much, much worse off than me. In fact I was quite relieved that I was told it was MS, they'd thought I had a brain tumour, now that one would have been difficult! You're doing a fab job yourself Lady, don't forget that! :) x

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  5. You are a very brave and inspiring lady.
    xx

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    1. Thank you, I think there are those much braver and with more things to face but thank you, I know what you mean :) x

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  6. oh ada! thankyou for sharing. what a story you have and are continuing to write. its great to hear that so far you are able to treat your MS naturally. you are an inspiringly creative lady, and to now know about the illness you are living with and managing makes you even more inspiring!!

    mezz x

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    1. Thank you Mezz, natural as much as possible! :) x

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  7. ~ Dear Ada...When life kicks, she certainly kicks hard! ~ You do amazingly well...I wonder if stress has any thing to do with MS ? ~Because we all know how tough dealing with a loved one with Alzheimers along with a child with special needs can be....Sending you love and thoughts of understanding your way, dear friend! Stress showed in a very different way to me, when life was at it's toughest with grief....My hair fell out in clumps and I developed Alopecia. I still suffer with this..I too stopped work ( had too) and took a course or two in healing, mostly for my self, though! I have learnt through being on here, the most important thing is your health! It really is....Thinking of you and wishing you more days just to be YOU again...Hugs and kisses Maria x

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    1. I know stress is a direct link, it really is a killer! I'm glad you've found a different lifestyle and I'm sure you're much happier for it! Thank you Maria :) x

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  8. Dear Ada, what courage to write this post and to be honest I am really grateful that you have. For me, what I like about blogging is getting to know the people behind their little blog better and this has definitely helped me. MS is such a scary diagnosis so my heart goes out to you. You are so positive and that it was it needs, so credit to you. Yes I definitely think your kids would much rather have a mum at home than at work and not feeling very well, and especially to make the most of this time when they are young. The prognosis of MS is so difficult and I know so many people with it, but there is hope and there always has to be, so keep working on your diet, always the best place to start (I will be posting about gluten soon) and yes vitamin D is a lifeline beyond words, especially for us living in the UK, as for six months of the year the son isn't even strong enough to penetrate the skin, let alone give us vit D. I use a brilliant tincture called Quantum Vitamin D3, which is suppose to be an excellent source. I am here for you if you ever need anything, and I am sure hundreds of people will echo that. Thanks for sharing this with us and sending you much love sweetie. xoxo

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    1. Vit D is key the managing MS I'm sure, positivity another one! Thank you Hannapat :) x

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  9. I had a feeling you had MS. You have a wonderful approach to life despite it's ups and downs. We should all take a leaf out of your book.

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  10. Thank you for sharing, Ada, my heart goes out to you, but I also admire you *so much* for your positive attitude, it makes such a difference! You are a role model! Chrissie x

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  11. Of course I knew about this, because we've chatted in the past about your MS and my ME, but I just wanted to say how much I admire your perseverance and your positivity, you are an inspiration m'dear :)

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    1. Well Annie, I've been so tired this week it's made me think how awful it must be to feel exhausted continually, hats off to you Sweetheart! :) x

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  12. I'm glad to know more about you and I will keep you in my thoughts for your continued good health. I think you're a wonderful person and I know that you have inspired me a lot. :)

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  13. Well now Ada I would never have known - and that shows just how incredible you are. Your blog is full of such wonderful things that it could only come from a positive place. A dear friend of mine was diagnosed with MS about ten years ago and has also cut down his work load - he is definitely feeling the benefits re:stress levels. I'll pass on the book reference to him. Well done for standing so strong - and your crochet is looking fab! Jane x

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    1. Please pass on the details, it's not for everyone but I'm sure it's helping me slow down the progression of the illness. Thank you Jane :) x

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  14. hi again, I'm a bit flat out with stuff at the moment- would you mind if I don't have the roll of wallpaper? I'm trying to make things a bit simpler rather than do it all at once- I'm sure you'll understand
    kindest,
    Elaine

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  15. Dear Wonder Woman,
    Your creative energy is inspiring...thank you for sharing. xx

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    1. Bless you Ethel, I've not felt much like Wonder Woman this week! Thank you :) x

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  16. Your outlook on this life is so inspiring Ada. You've dealt with so much in the past few years, that it could easily bring a person low. I'm so glad that you've kept your thoughts positive, and that your change of lifestyle and diet has helped you. I've read through other people's comments, and can see that through this strange virtual world you've touched a lot of hearts and shared some tears and hugs around the globe. Take care my friend ... Wendy xox

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    1. I don't feel I have a choice but to be positive! The alternative is not great! Thank you Wendy :) x

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  17. Gorgeous Ada, thank you for sharing your journey with us, you are ever so brave and courageous and I am so pleased that all the natural things you have done have helped. I guess you know by now that I am a Dietitian and used to work in Neurology for the past 9/10 years. I am now working as a specialist in Oncology as a Macmillan Dietitian. I used to treat a lot of people with MS and saw some good results. Pacing yourself is ever so important too and I am pleased that you are mindful of this as the exhaustion can be immense at times xxx Your creativity is a fabulous outlet and I am sure very therapeutic for you Ada, I am sending big hugs and love to you xox Penny

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    1. I think those visiting the oncology dept are the brave ones! Yes pacing myself is so important, thank you Penny :) x

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  18. Ps. Hi Ada, it's me again. I just wanted to add that professionally I would respect your choice in diet (and would always help my clients to make informed choices), but am also aware that there are lots of non-evidence based theories 'out there' which can also be compromising of one's nutritional status in the long term, so go carefully and safely as I am sure you are xox

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    1. Hi Penny, yes I know there's lots of 'miracle' cure out there that can do more harm than good! This diet is very healthy, lots of fresh fruit, veg, fish, nuts pulses. It eliminates processed foods, saturated fats, meat and dairy. I eat healthier than I've done in years but can always improve, I still eat crisps which I really shouldn't!
      I'd love you to check it out, from a professional stance and let me know what you think! :) x

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  19. you truly are an inspiration, you have such a great attitude and outlook. its an honour to read your blog.

    N x

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  20. My best wishes go out to you , it's good to talk.
    Life is so precious as we never know what will come our way. Like you say it's more positive to focus on the present- family- friends and all your lovely crochet and fabric.
    Flissx

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    1. Thank you felicity, you're so right, it's easier said than done but I'm getting there! :) x

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  21. Thank you for sharing your story, my dad has MS, he was diagnosed over 20 years ago. He is now in the secondary progressive phase. I have never heard of using vit D with MS. I will be passing on the website link to him and maybe he could try some of the things from it. Thanks x

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    1. I hope your Dad is doing well. There's lots of research coming through that relates low levels of Vit D with relapse rate. I think it will be a key component in the future but a bit 'on the fringe' at the moment. 30 years ago people would not have believed frolic acid could have such an impact on spina bifida but it has! Thank you Nicci :) x

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  22. Dear Ada,
    You are such an inspiration and I always admire how you are so positive despite the difficulties you face. Your blog is always so bright and creative and always one of my favourites. Hope you are feeling better than you were at the beginning of the week. Sending you big hugs.
    Sarah x

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    1. Thanks Sarah, yes I'm feeling much better, my energy levels are starting to rise again! :) x

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  23. Thank you for sharing this Ada. I have two friends with MS so know a little of what you are going through. Lots of love to you Ada xoxo

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    1. Thank you, I hope your friends are doing well, please pass on the info, they might be interested in some of the advice :) x

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  24. Thank you for sharing. As you say, life isn't always easy. My family had always assumed we were fit and healthy and destined to live to a ripe old age, and then 2 years ago my little sister (just 40) was diagnosed with bowel and liver cancer. As you say, you get on and deal with what you have to. Funny you say about being a control freak, it was one of things she struggles with most - the lack of control. But hopefully she is out the other side now, living a different life, with different priorities.
    Good luck to you. I'm off to Yarndale with a friend - so lots of photos should follow! x

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    1. Oh Sara how awful for you all, I hope your sister makes a full recovery. My mum had bowel cancer 30 years ago, she had her 86th birthday yesterday! :) x

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  25. I enjoy reading your blog, little did I know it was written by such an amazing and inspirational lady! Sending love and best wishes X

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    1. Thank you for visiting and letting me know you're there! :) x

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  26. Oh Ada. Thank you for sharing this with us. You do realise you're an inspiration?? You brave, creative, busy, happy, wonderful woman, you have my total respect. xx

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  27. Hello Ada
    I think you are so right in your words, to stay positive and live for the moment..nobody knows what their destiny holds for them..
    bless you for sharing your condition
    I must admit that I felt the same about bring up my children, I stayed at home with them (the home and holidays were simpler but oh so loved)
    Thinking of you my friend
    Thea xx

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    1. Well Thea, I'm still working at it but its better than dwelling on stuff that might not happen! Thanks for your words of encouragement :) x

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  28. Oh Ada, if I was there I would be giving you a big hug, it's all I can do really. My son has cystic fibrosis as I held him as a newborn I was told he would be lucky to live to be 18, he is now 24....
    Life has no timetables, no agendas, if you have love you have it all. So LOVE to you and your loving family.

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    1. Gosh Susan, now that's something I would find very difficult, what I've been dealt is easy in comparison, wishing you and your son all the best :) x

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  29. I am bowled over that you do what you do with MS. I think your attitude has a lot to do with how you deal with disease. I was diagnosed with RA 5 years ago and I was totally upset. My paternal grandmother had RA and was bedridden for the last 20 years of her life and passed away when I was 18. She suffered so much and 45 years ago, there were no treatments for it. All I could see in my mind when I was diagnosed was her sitting in her bed and crying with pain. Luckily, I have been able to keep going but like you, had to stop working. I try to maintain a healthy outlook on life and am thankful for each day I get out of bed. I admire you for all the things you do and for moving forward. Good for you doing the research and adjusting your life accordingly.

    Hugs,
    Sharon

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    1. I think a positive attitude is a big part of managing any chronic illness, that and a sense of humour! Keep moving sweetheart, just a little at a time, and thank you for your kind words :) x

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  30. Live for the moment and make the most of every minute. Listen to your body and be creative. Always worked for me in the challenging times in my life. Jacqui x

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  31. Sending energy. Meant to be going to yarndale but think I've got to cancel - next year?! X

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    1. Thank you! We will have to look at everyone else photos, meet up next year! :) x

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  32. Ada, you surprise me every time I read your blog. You are so brave writing so honestly about your MS and your daughter too. But you are such a creative and upbeat person too, you inspire me a lot also. You have the right outlook on life and I live how you make the best of what you have and I live you all the more for that.
    Sending you a great big hug,
    Rosie xx

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    1. Thank you Rosie, in a way the MS has allowed me to be creative, so not all bad! :) x

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  33. A friend of mine has MS, so I have a little insight as to its unpredictability of timing and severity. Wow, you would never know your struggle through your blog - always creating and so positive! You go girl :)

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    1. Thank you, I hope your friend is doing well :) x

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  34. Ada your an inspiration....Heidi
    love your beautiful color images!

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  35. I'm so pleased you have creativity as one of your medicines, it really is amazing stuff :) x

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    1. Thanks Anna, it's a very good medicine! :) x

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  36. Loving you for your courage and positive attitude. It's trite to say, maybe, that you put me - and others - to shame when we blether about our Lot. But true. More power to your elbow, Ada, and keep on keepin' on. Oh, and have you researched coconut oil? I've been looking into it myself - all evidence -based medical research- and meditation. Love your random photos too! Lxxxx

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    1. Thanks Lynne, the diet I'm on is a low saturated fat diet and I think coconut oil is high in sat fat, I'll look into it though! Meditation is an important part of the program but I'm rubbish at it! :) x

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    2. Ada, cocnut oil IS a saturated fat, but it is FULL of medium chain triglycerides which are VERY good for you, where as the polyunsaturated rubbish we have been peddled (initially by the USA plant-based oil growers associations and their huge power ) has vilified saturated fat. Coconut oil is included in infant formulas - as a Health Visitor I remember when this came in, they were trying to boost the MCFA (medium chain fatty acids.) in babies. and it is also included in TPN, the total parenteral nutrition which very ill folks have by line directly into their jugular vein. More and more scientific, evidenced based research is coming out about it's use in treatment and prevent of Alzheimers, and auto-immune disorders. I use it in cooking because it doesn't break down when heated, tastes good and does us good! I also take some by spoon each day and use it on my face - it has done wonders for my acne rosacea! Loads of info on line and discussion on youtube. But whatever you are doing, good luck and keep you pecker up, chuck! Oh, and just to say, I am eating for reduced inflammation, as most disease start with inflammation, Coconut oil is an anti-inflammatory food.Lx

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    3. Thanks Lynne, I'll look into this one! :) x

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  37. Hi Ada,
    I can't really add to the sentiments already expressed here about the inspiring way that you cope with your condition. My auto immune condition is very different to yours, but something you say really resonates: after my last serious flare up, I really felt that I needed to feel as if I had some control over it (even though it actually seems to be very random). I researched diets and found one which is endorsed by St Thomas's Hospital, and I followed it rigorously for over a year. Whether it did or did not help I will never know, but the feeling that I was in command, rather than my ulcerative colitis, proved a huge boost for me, and I am convinced that it helped to prolong my remission. I'm also sure that having a creative outlet is essential for some people, and if the speed with which you've cracked the crochet is anything to go by, your creativity is a very powerful force indeed.
    Sending you all my good wishes. x

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    1. Thank you Sweetheart, I think we are what we eat, I wish I could afford all organic food but I can't it's so expensive! Well done you on doing your best to manage your own condition :) x

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  38. Oh Ada, must say I wondered if MS was the issue with previous comments you had made. I think you are truly amazing to maintain your positivity with all that you have to manage at home and with your health. You are an absolute inspiration and do take care of yourself so you have the energy to keep blogging! mel x

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    1. Thanks Mel, it's not always easy, our special kids require lots of patience and energy as you well know! I'm lucky as there's two of us to share the load! :) x

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  39. Oh darling, I had no idea! You are a very strong person, as we are often remindedthat we are never given anything we can't handle. You are a true inspiration! Carpe Diem indeed.

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    1. Thank you, but I don't think I'm any stronger than anyone else, in fact I think it's easier to be positive, I think it's the negativity that wears you down! :) x

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  40. Hi Ada,its such a nasty shock being diagnosed with illness, but You learn to live with it ,well theres no choice is there :) I'm glad You shared Your illness with us I could never find the words on my blog to share mine, You' ve done it beautifully. have a lovely weekend.xxxxlove juliexxxx

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  41. Thank you Julie, I'm sorry you've ended your blog, please try and find a way to start again! :) x

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    1. started a new one ,"crochet at toadstool house", was nt able to use the same one :( hope you can find me,xxxx

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    2. Hi Ada,I 'think ' I may have got My old blog back,fingers crossed, I put a search in this evening and it came up, I really hope its back, maybe they did something? thank s so much for your offer of helping me with the new one.xxxxx

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  42. You are brave and extremely positive. Good for you! Sending you much love. :) x

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  43. Hi Ada, I'm just doing some catching up on blog land and was interested by this post. Life throws curve balls and challenges for us all but MS is not cool. I have a friend with it and she is managing very well with taking good care of herself to the extent that her gardening prowess and blog thereof has gained great acclaim with the publishing of a book and all sorts of things in the pipeline. She is ' Sarah the gardener' if you'd like a look. I'm just sad she doesn't have time left to craft with us at Time Out. Be well, blessings Trills.

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    1. Thank you Trills, I'll look at your friends blog, gardening definitely helped me recover from a relapse I had a few years ago, build up my strength again, there's something special about connecting with the earth! :) x

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  44. You are an amazing lady, Ada. I love your positive attitude and admire so much how you have coped with your illness and continued to enjoy your life. Your creativity must be a big help too, it is such a powerful and positive energy. Love your crochet blanket and all your photos today.
    Sending love.
    Helen x

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  45. Creativity is a life force in itself, don't you think! Thanks Helen :) x

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  46. gosh Ada I missed this post, I don't know how! I think it's wonderful how you presented it. It's light-hearted but real none the less, we're all behind you that's for sure! Heather x

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  47. Lovely Ada ... you are wonderful ... missed this post somehow ... lovely positive words ... you are an inspiration ... love, Bee XX

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  48. Thank you for sharing sweet Ada and for your strength and positivity in it all!! Very inspiring you are for us all! Lots of love! xo Heather

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    1. There's a lot to be said for positivity! Thank you Heather :) x

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  49. Such an honest and open post to share ... you ARE an inspiration. Your bright and colourful blog is always uplifting. Take care honey. M x

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Hello! Thank you so much for leaving your thoughts and messages with me. I read each and everyone and will try and answer any questions as quickly as I can! :)x