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Knowing M.E. Knowing You

09 Jul

3274_162666840206_5873833_nEveryone, I wish you to meet my friend Sophie, AKA The Sophster!  You may have seen her sometimes inhabiting my comments section with the Gravatar Shiningstar85 and I think it is high time that I bring her to your attention.   Now our Sophie suffers from the debilitating M.E. otherwise known as Chronic Fatigue Syndrome.  Quoting http://www.patient.co.uk  Chronic fatigue syndrome/ME is a condition where you have long-term disabling tiredness (fatigue). Most people with chronic fatigue syndrome/ME also have one or more other symptoms such as muscular pains, joint pains, disturbed sleep patterns, poor concentration, headaches. The cause is not known’.

Although we have never physically met, we keep in contact via Facebook, where it was that I first took the plunge and invited myself to be her friend with the hilariously inaccurate promise of ‘I’m not weird’, of course that was a complete lie but we have carried on talking anyway.  Since 21st August 2009, in fact.  We have had some random chats down the years, which have taken us outside the realms of normality but it was this recent paragraph which especially caught my eye…

I think I could relate to the whole stargazing thing – How they are so far away, a bit like friends I feel close to, yet still so far away from. the same with the outside world.  if I’m close to the window, I’m inches from the outside world yet I so rarely get out there, movement makes me feel so bad.

I don’t think I will be alone in recognising the melancholy of this passage, but also the way in which she succinctly analyses and defines how her body may physically struggle but her imagination is completely free to ride the winds of whimsy.  I find it an extraordinary juxtaposition to compare the vastness of space with the thinness of a window that may seem akin to something like a barred prison cell window preventing the experience of the outside world.

Inspiration comes from many places but when you meet someone who doesn’t have the strength to nip downstairs for a glass of water, let alone go down to the pub or plunge into the crowds for a shopping spree, it brings to the fore how much we take for granted and how many of the simple things in life we miss.  Maybe we should take more interest in what we perceive mundane and perhaps we should throw off the shackles of blindness and embrace the beauty in everything we see.

At the moment Sophie isn’t really ready to do a blog, which is perhaps the best way to allow your imagination to reach the towering heights of independence (which has plenty of elbow room) and strange new worlds, not that I am biased on anything. In fact she does take time to get around to each new post but this is also due to some dodgy internet troubles, however I hold out hope that one day we shall see a new shining star on our horizons (sites) and that we shall all see things through new eyes and a new perspective.

Witchs-Broom

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49 Comments

Posted by on 09/07/2013 in Life

 

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49 responses to “Knowing M.E. Knowing You

  1. Alastair

    09/07/2013 at 18:58

    I have know people with M.E. and am guilty of the fact that I used to get ME confused with MS. Reading this, I see how easy I have it with my difficulties.

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    • StetotheJ

      09/07/2013 at 19:35

      It does put life into perspective and makes us cherish what we can actually do, you’re right.

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    • shiningstar85

      03/08/2013 at 11:50

      Common error but glad you can separate the two now. The confusion you and others have had was not helped this year by m.e an m.s awareness week beingin the same week of the year!!

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  2. Letizia

    09/07/2013 at 19:07

    Sophie sounds lovely and her writing style is so engaging – if she decides to start a blog, please let us know 🙂

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    • StetotheJ

      09/07/2013 at 19:14

      I sure will, I have told her we are all great and that I would give out a link and a bit of a write up to get her some traffic. You are right about her writing style, it is so full of imagery. Hopefully she will be able to reply to these comments at some point, although it may be a while due to various issues.

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      • Letizia

        09/07/2013 at 19:24

        It can feel a bit daunting starting a blog (I remember feeling quite shy at first!) but I still can’t get over how supportive everyone is.

        And as she has health issues, she should know that there is no pressure to post on her blog all of the time (due to my hectic schedule, I sometimes only manage it twice a month!). I know with ME it’s important that things be as flexible as possible to accommodate flare-ups, etc; it takes a lot of courage on the patient’s part.

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        • StetotheJ

          09/07/2013 at 19:39

          You do good posts my good friend, there is always that fear of the close knit community to start off with…and then everyone is so welcoming. I alwyas pop over every couple of days for my fix.

          yes, you are right, I have mentioned that people post at different times and linking up to Twitter etc as well as people just nipping over whenever and the reader that people will always pop around especially when she gets regulars (and I think there are already a few potentials on here!) they will always return. It says a lot that there is already an understanding of not only M.E. itself but also the needs which go with it. Fantastic support thank you for this. I love you guys.

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    • shiningstar85

      08/08/2013 at 20:15

      Thank you Letizia 🙂 Still having trouble finding my way around this place but I will do a blog sometime!

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  3. suzie81

    09/07/2013 at 19:28

    One of my closest friends suffers from ME. It is a little known, barely understood illness and my friend is an incredibly strong person to deal with such a debilitating illness…

    If your friend ever starts a blog, let me know…

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    • StetotheJ

      09/07/2013 at 19:32

      I sure will, already the fantastic support I knew Soph could expect is pouring in. I couldn’t imagine be in such a position as to have M.E, although I know five people who have either had it or still do have it. Strong she is and completely awesome.

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  4. Christina ~

    09/07/2013 at 20:11

    So very very nice to see a photo to put with a familiar gravatar name! Hi Sophie!! hehe couldn’t help it….

    You write with compassion and encouragement and gave us a beautiful sample of her very own writing style…thank you for introducing us to Sophie and also for defining that which most don’t know or understand fully.

    I hope that she will indeed blog…even if only posting rarely…won’t matter to us! We (yes I represent all of us bloggers haha) will be delighted and honored to have a glimpse inside her world and get to know her further.

    I honestly can’t imagine where I would be if not for the amazing WP community and incredible friends I’ve made here. We all share in each other’s lives…bringing light, love, and encouragement. It is a truly magnificent gift….a gift that keeps giving…

    Come join us Sophie…I’ll put the coffee/tea on… ~ xxxx

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    • StetotheJ

      09/07/2013 at 20:23

      You encapsulate it all right there about why a blog is great and how the community is proper mint and supportive in all ways. I think a blog will perhaps be in the offing in a future, perhaps if I whinge enough….

      The idea to do this post came after reading the quoted bit. I then felt a bit slow for not having done something like this before so I am glad I have finally done it and showcased some clever and lovely writing, I know she would be a good addition to our ever growing circle of talents.

      CFS is quite an unknown really, which is strange as I have known five people who have/have had it, perhaps that is disproportionate to most people experiences. I think a glimpse into anyone’s mind is unique but someone with a totally different take on life due to restraints is always going to be fascinating.

      I take my tea with one sugar….your coffee makes me sleepy. xxxx

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    • shiningstar85

      03/08/2013 at 12:02

      Thank you Christina. Everyone on here seems so encouraging. I tried to reply before but due to some touchscreen error my comment was lost in to the ether. Another reason I’m hesitant about writing a blog as don’t want to spend my energy on something that will disappear! I have got a new internet tablet now but can rarely get online on computer or spend long enough on it to do much. And look! I have a picture! Although I seem to be on my side but in a way that’s representative of how I am most the time, lying in bed. I am going to put anew more smiley pic of me up hopefully tomorrow though. Thank you so much everyone else on here for your comments too if you read this. So supportive. I will try and reply to the other comments too and have a peek at some of your blogs (looked at yours Christina, look lovely poems). Ste j, 5 does seem a lot of people with it but it does seem more commonly diagnosed and even common now, however there’s probably a variety or combination of causes so could in fact be different illnesses. But does seem quite a few people have come across at least one person with it.

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  5. shadowoperator

    09/07/2013 at 20:48

    Hi, StetotheJ (how do you prefer this to be abbreviated, if at all?). Thank you for this lovely and engaging portrait and introduction of your friend Sophie. CFS is an illness I’ve heard of before, but it’s one I think with a certain mystery attached, and mysteries can sometimes provoke hostilities among imagination-limited people, who are likely to think the ill person is exaggerating or engaging in hypochondria, as is often the case when sufferers describe fibromyalgia, another mysterious illness. It’s really unfair for them to assess people this way, and there are a surprising number of people who have these illnesses. I don’t know if this will help at all, but unless I’m mistaken, someone else whose excellent blog I’ve recently been following (thinkinginfragments.wordpress.com), mentioned having CFS, or something very like it by description. Is there any point, you think, in trying to put together a contact, or do you think that would only be rude and intrusive on both people? Alex (at thinking in fragments) hails from the U. K. and is a professor of literature. Just thought I would mention it, and leave you to take it under consideration. Sophie’s writing sounds like that of another natural poet.

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    • Ste J

      10/07/2013 at 19:00

      Ste J is fine, due to recent confusion I have changed the ol’ Gravatar to make my name seem less nonsensical. That is a good idea, I’ll Drop Soph a line and see what she thinks. You are right, small minded and stupid people do tend to go on the negative side and assume laziness or faking or what have you and it’s nice to get the message out about what it actually is and to get such a massive and positive response, it really shows how great this community is. who wouldn’t want to be part of this?

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    • Ste J

      11/07/2013 at 14:40

      A bit of an update, Soph thanks you for the blog address and will look it up when her ‘net gets better at working. I do have a bit of an update to publish later but just thought I would say that she was really grateful for he address and your kind words and thoughts.

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      • shadowoperator

        11/07/2013 at 16:24

        Thanks for the update. I’ll tell Alex at thinkinginfragments that she should be looking for you guys. Best of luck to Sophie–we all have our baggage, each and every one of us, just not the same baggage–otherwise, the world would be a boring place!

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    • shiningstar85

      08/08/2013 at 20:20

      Thank you for the compliment in the last sentence – I like describing things but I find actual poems hard, unless it’s free poems.
      Ste J did indeed drop me a line. Its not at all rude. Actually the next blog “Soph speaks” was mostly my reply to what you siad – I do have quite a few friends with ME/CFS online and we all seem to be affected quite differently so I cant relate to many of them, but I will check out that blog. Thanks.

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  6. Lyn

    09/07/2013 at 23:23

    Please do let us know if Sophie decides to start a Blog – personally, I think she’s a natural. Oh, and put me down for a black tea one sugar or a large cappuccino with one Equal 🙂

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    • Ste J

      10/07/2013 at 18:37

      haha, it looks like we will be having a proper coffee shop meet at this rate, there best be cake as well! I am hopeful that Sophie will get to read these posts soon and she will love what you say about her being a natural…as usual you are spot on.

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  7. Robyn Lee

    10/07/2013 at 03:48

    This is just beautiful Ste J… your tribute to Sophie says so much about your own compassionate heart. I can certainly relate in many ways – the “stargazing” analogy is perfect. So close but yet so far away — how I often feel about my friends and family since facing more and more challenges physically over the years. I don’t have the severe fatigue characteristic of ME (CFS), but I have a host of other issues… that makes it extremely difficult for me to socialize and interact out in the world. I love people, so miss that very much. The blogging has been so amazing in this regard. It’s very forgiving – I can be in all kinds of positions (to accommodate my unstable joints) at any time of day or night, and always know I can visit friends here – or create – or enjoy incredible talent shared by those I’ve come to care about. Truly, I never expected blogging to play this kind of role in my life… I hope that Sophie considers joining our little family… she can ease in slowly to see how it feels… She may “fall in love” as so many do! ~ x RL

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    • Ste J

      10/07/2013 at 18:51

      When Sophie reads this I think perhaps she may give it a go when she feels she is able. The freedom we all have with blogging is so underrated it makes me laugh. I mean who would have known how close we would all become and how artistically inclined we would discover we all are. The power to speak to people at all times of the day and read so many intriguing thoughts, perspectives and ideas is truly immense. I don’t think I could be a decent member of society any more without my blog, yours or all the others awesomes that I follow.

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      • Robyn Lee

        11/07/2013 at 00:59

        I do agree Ste J! It really is a unique way of touching lives, and also being touched. I have learned soooo much here… it’s remarkable. I’ve also been witness to others’ growth and healing. I never would have understood this had I not experienced it. I do hope Sophie considers… I am sure she will find a lot of support here… I know I have. 🙂

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    • shiningstar85

      08/08/2013 at 20:24

      I want to, but I cant get the full site on my tablet and cant even seem to upload a new gravatar pic! So on my side I am for now – although I am literally on my side in bed most the time so that is kind of representational! But will get a more smiley one up as soon as I can and will also check out your blog soon Robyn 🙂

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  8. Seyi sandra

    10/07/2013 at 08:30

    This is a sad post, I must say but somewhat enlightening and motivational. I’m sorry about Sophie’s condition! I can see that she’s living and enjoying the joys of your friendship. I’m keen to see her blog, do let me know when she does and do send my love to her.

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    • Ste J

      10/07/2013 at 18:41

      I shall do both, it is so great how everyone is so encouraging and kind. Not that I expected anything but the bestest from you guys, of course.

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  9. RoSy

    11/07/2013 at 00:42

    Nice to meet Sophie!
    Sorry about the M.E. I’ve never heard of it until your post.
    Although I think I have seen it. The last place that I worked at – there was a co-worker who’d doze off all the time. I wonder if he had some form of M.E. or maybe narcolepsy. ?
    You can add me to the list of let me know when Sophie starts a blog too. Maybe she can start by posting only once a week or every other week. Or – not be on a schedule at all – just post as she feels like it.
    Warn her though – that it’s addicting.
    PeAce!

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    • Ste J

      11/07/2013 at 16:37

      That is probably narcolepsy but sadly, I am not knowledgeable enough to know if that could be a symptom of ME also. Haha, it is addictive, to right about that. One of the most daunting thing about a blog is starting out but Sophie will be sorted for her followers straight away…this pleases Ste.

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    • shiningstar85

      08/08/2013 at 20:29

      If I do, probably wont be on a scheduled basis with the unpredictability of my illness and when I get inspiration I tend to get a lot in one go, or sometimes do too much in one go then relapse!
      I’m guessing it’s narcolepsy too – I dont think people with ME keep “dropping off”- well sometimes I do but if I was able to work I would have to go somewhere quiet for a lie down…well some people have hypersomnia and some have insomnia like me, despite being so tired.
      Anyway, thanks for your support.
      I have had a few more ideas for blog posts – youre right, I could spend so long on here reading everyones blogs and finding new people and posting my own!

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  10. Claire 'Word by Word'

    12/07/2013 at 07:19

    What a beautiful post and introduction to your special friendship, I love the analogy with a bright star out there with a new perspective, I do hope one day we will get to discover it too.

    And Sophie, blogging really is great when we remove all pressure or expectation from ourselves and see it as a sense of liberation and freedom to share whenever we feel so inspired. It’s there when we need and makes no demands on us when we are not and it can be revisited by anyone whenever they choose. Kind of perfect really. And with SteJ to guide you, well, as I said, perfect.

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    • Ste J

      12/07/2013 at 18:51

      Wonderfully put, it is freedom and liberation and the best place to muse. I feel inspired now and I already seem somewhat entrenched here already…the power of words.

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  11. Anonymous

    12/07/2013 at 08:13

    I wish Sophie the best of luck. A few years ago, I went to my doctor regarding extreme fatigue. I was told to take Vitamin D. I guess the sun doesn’t shine enough in Oregon…. A few years later, I’m still tired. Admittedly not as much as before, but, still, I wonder if there isn’t a better solution. As with most things in life, I’m sure those with a higher station get a better diagnosis….

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    • Ste J

      12/07/2013 at 18:57

      I’m sure a better solution could be had with more money but this is always case, looking over the internet, it does seem quite a stock answer that requires minimum of actual checking…I hope your search for something better is fruitful.

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      • shiningstar85

        03/08/2013 at 12:10

        I’ve been taking vitamin d the last few years as well. Unsurprisingly my level is low as I am v light sensitive and unable to stand daylight. Not sure if its helped or not. There are very few private practioners in the UK, and they do offer more specialized treatments and more tests but haven’t been able to find figures for how many people have been helped by these. I’ve tried online advice from a private advice from an private dr for sleep which helped more than anyone elsebut even with this it seems very unlikely I’ll ever get her recommended 9 hours sleep, I’m very lucky if I get half that. Plus the other big thing is you have to be well enough to travel to them and cope with talking and traveling back and forth which I’m not. Sorry if I’ve gone on a bit!

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        • Ste J

          03/08/2013 at 18:51

          You never go on, my friend. I always like to know how you are getting on and you always inform me and that is important for my knowledge and perspective on life. I do like your sunny blog background, it’s very you!

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          • shiningstar85

            03/08/2013 at 22:15

            Do I have a sunny blog background? I’ve not done anything to it, not since my last tablet worked! I’m obviously clueless!

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            • Ste J

              04/08/2013 at 19:02

              Maybe it is a default thing, I can’t remember that far back as to how it is. It was years ago when I first signed up.

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          • shiningstar85

            03/08/2013 at 22:20

            I can’t even work out how to see it on this mobile app anyway which is prob different to how u see it. My homepage just says my username then ‘just another WordPress site’. Nice! Can’t even seem to put the word ‘not’ before it!

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            • Ste J

              04/08/2013 at 19:06

              You can change the tag line in one of the menus on the left of the screen. If you go to the general settings you will find an option there to change it to whatever you want. It;s just a case of perusing the options until you have it how you wish.

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              • shiningstar85

                08/08/2013 at 20:32

                It looks much easier to understand on the laptop but I have to go now… thank you for helping me out and your encourage,emt!

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  12. sakuraandme

    12/07/2013 at 13:29

    I understand this very well. My son at 15 got Glandular Fever and instead of resting continued doing sports. It was compulsory at his school and as a result he ended up with Post Glandular Fever Chronic Fatigue Syndrome. What a nightmare it was for him trying to get through his Tee. He was an excellent student but missing so much school his grades fell and he wasn’t the fit healthy boy he had once been.

    As his mother it was horrible to watch his dreams fall apart. He would plan something only to wake and find he couldn’t get out of bed. This went on for 3 years. He’s now 21… 6ft 3 and goes to the gym regularly. Eats really healthily and takes magnesium, zinc and a multi-vitamin. He starts next term at Uni studying Finance and Accounting. I’m really happy for him.He knows he has to watch his health and knows just how far he can push his body.

    I hug your friend and wish her all the best. It’s a horrible thing and people are very ignorant to just how difficult it is for a sufferer. Many hugs and have a great weekend.Paula xxxx

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    • Ste J

      12/07/2013 at 18:39

      I am glad there was a happy ending to your story, it is always good to know that there is hope of remission and recovery. I always feel a bit ignorant about it, but am slowly learning and trying to comprehend what it must be like. Another fantastic comment to add to the pile of evidence showing just how great and broad minded everyone here is.

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  13. LuAnn

    19/07/2013 at 18:09

    What a beautiful way to honor such a lovely, courageous friend. I love that you are opening up and showing us the true Ste J, a compassionate, caring young man, much more than just a very gifted writer and book reviewer. 🙂

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    • Ste J

      19/07/2013 at 18:13

      Crikey, high praise indeed and thank you…it has been to easy to hide behind books but this year, having done my first proper, full, official year…although I have been with WordPress for four in total, and gaining some wonderful friends in the process, I feel more confident and comfortable with myself and my writing…These days I just find it easier to write about real world things and tackle subjects that challenge me. Your words always give me the confidence to write more as well.

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    • shiningstar85

      08/08/2013 at 20:30

      I agree that it’s nice to see more posts about Ste’s thoughts and everyday things as well as book reviews – actually I encouraged him in this! I think he said your blog was a travel one? Maybe you inspired him to write a bit about his travelling experience?!

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  14. Anonymous

    21/07/2013 at 18:57

    hey, i’ve got hypothyrodism…. don’t see you doing a thread about me!! wel jel. Can’t believe I have just typed that….. prob why theres no ‘me’ thread lol!! o well. Ste J, keep up the good work, keep geek-in-it up!! x
    Hannah T.

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    • Ste J

      24/07/2013 at 20:04

      Wel jel…I used to respect you lol. I only geek it up so you look cooler..I’m sure you will inspire me to do a post about you at some point my friend…you are awesome like that. x

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    • shiningstar85

      03/08/2013 at 12:13

      Hi, my mum has hypothyroidism and has been affected quite badly by it and I have now been diagnosed with borderline low thyroid too! So can relate and sympathise. Sophie

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  15. shiningstar85

    09/08/2013 at 14:51

    By the way I rate and review books on goodreads.com if anyone wants to add me on there, I’m Sophie b, not sure of the web address :/ and I’m on pinterest which I find lovely pictures of places round the world and funny cute pix etc, username sophisticat85 – don’t have any friends following me on there!

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