Living in a limited world (an introduction)

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The truth of our worlds?

I started writing this blog in 2011 on another site that is now closing. So here I am complete with the past and heading into a future I am happy to share with you. I suspect like everyone else when they start to blog, they believe that it will just be a few lines every now and then, the truth for me has turned out to be something else completely. I write daily, so this is a full and detailed account of living with chronic illness. The symptoms and what they do to me, not just physically, but emotionally. The impact on everyday life, not just for me but my husband, and of course, on our marriage. I am now in my 50’s, but I was just 21 when my story really began, although it took nearly another 20 years for the doctors to work it out.

When I was a child, I thought a good life meant that the sweetie jar was always full, and no one told you when to have a bath. It’s odd how life just takes hold, and nothing is ever what you first believe it to be. I chose the picture above, to sit here, as it is all about belief, it’s truer than most think it to be when they first look at it. Take a good look, then ask yourself honestly, which is your view of people with chronic illness? If it fits any but the last, well prepare yourself to see that side and more, as I hold no punches, and you may find out things, you don’t really want to know. But unless you read, you will never understand and understanding, is such a small thing to ask, and that is all I and others with a chronic illness really ever ask for, a little understanding. My blog is a picture of my life, there are happy, sad, funny, painful moments, lessons I learned and things I’ve discovered. If you leave here with nothing else, please leave with a touch more understanding at the least.

Relapsing Progressive Multiple Sclerosis took over my life and slowly, I found myself housebound, with a list, an ever growing list of conditions. My collection is a list as long as my arm, the more they really looked, the more they really find. Being housebound isn’t an easy place to be at first, but with a little time and planning, it has become my sanctuary, where I live and live well. I am happy, I am more than happy, yes, you can enjoy life just as much as ever, and still discover new things about yourself, and others, without leaving your home. If you follow me on Twitter, you will know that my bio has one strong and true statement within it ““Being housebound is no worse than being earthbound”” It’s time for you to understand that statement, please enjoy reading my daily blog.

If you really want to start from the very beginning, well follow this link for some not so well-written entries, yes they do improve, I learned to write along the way: My first post from January 2012

93 thoughts on “Living in a limited world (an introduction)”

  2. Reblogged this on Watch and Whirl and commented:
    ……Earlier today I posted about my chronic pain and tonight I saw this post. The two seemed to go hand in hand. I understand chronic illness and chronic pain. Other people can understand and sympathize and it is appreciated, but until you know what it is like have your health fail and you can’t change it and there is no day you can take a break, you can’t really know. I understand we all have things in our life it we wish we can change, don’t get me wrong. We can deal with negatively and become victims, or we can find a place where we use it for positive growth and become better people. That is the one choice we can make. Find the good in the negative. Being housebound, as she says can also be a sanctuary, where some may think of it as a prison. Both ways you are still inside. I was housebound for several years as i battled my illness. I’m doing better but I know my limitations and I push the limits. It’s like running that extra lap. I haven’t had a chance to read her other blog posts yet, but I have a feeling it’s going to be just what the doctor ordered.

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  3. Pingback: Living in a limited world | Carladawn64

  4. I am chagrined that you have MS. I am confident that you are making the best of it. I remember on your blog the entry about Cecil the lion whose life ended by greed of many men and my answer to the blog entry promoted you writing about being my spiritual sister. It scared me to write back from your spiritual brother and I wanted so bad to write this but I was stopped by the experience of so many that has said to me about being brothers and sisters and who created havoc in my life with my social community websites that I owned in the past. I basically closed my sites because of this. I run from the word brother and sister but I do believe we are all brothers and sisters. I remember reading my first poem of yours on your site. Well my head went for a spin at words not invented to describe your poetry. I understood the poetry. This brings me to say that I believe you are my spiritual sister. I hope you can forgive me for the hesitating. Be well my friend

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  5. I am so sorry that I made an error with my entry. I thought your post was Carla speaking about her self. Although I am still chagrined over anybody having an illness it seems from your post you are making the best of it. Sorry for my error again. Be well.

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  7. Pingback: Living in a limited world | I'd Rather Be At The Beach

  11. Hello I am so excited I found your blog page,
    I really found you by error, while I was seareching on Aol for something else, Anyhow I am here now and
    would just like to say many thanks for a incredible post and a all round thrilling blog (I
    also love the theme/design), I don’t have time to look over it all at the
    minute but I have saced it and also added your RSS feeds, so when I have time I will be back tto read more, Please do keep up
    the excellent jo.

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  12. Howdy! This post couldn’t be written any better!

    Reading through this post reminds me of my old room mate!
    He always kept talking about this. I will forward this write-up to him.

    Fairly certain he will have a good read. Thanks for sharing!

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  14. Pingback: Living in a limited world (an introduction) | weightlossjourney2hellandback

  15. Wow – just wow. I’m not the “best” with WordPress / Blogging yet – but I BELIEVE that I shared your blog on mine…I tried to anyways I hope I was successful – just Wow – you grabbed me like a monkey grabs a fruit! Loveeeee it!

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  16. Thank you for checking out my blog and welcome to WordPress! As I read every word of this I was seeing my own life unfold. Except for the main diagnosis we are very much alike – late diagnoses, new conditions/symptoms added on a regular basis, and our attitudes towards educating others about invisible illness. I look forward to reading more about your story. Oh, and I thought I was just going to be prattling on about my life and I ended up, like you, writing daily (though if my hands hurt too much or my breathing is bad I miss a few) about what makes me Lydia!

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  19. After reading your kind comment on my blog, I came over to visit you! I’m sad to hear of your chronic illness and pain with MS, but I’m happy to read your lovely writing and insights, and to hear how you approach and enjoy your life. You now have a new follower and friend! My husband’s mother had MS for many, many years so I’ve had some glimpses into that struggle for her and her family. I’ve had fibromyalgia for somewhere around 10 years. I’m able to work and stay somewhat active, but it is really hard. I hope you have a good day today!

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    • I know that Fibro is tough, I actually have both but I freely admit, I often don’t know which is behind what, it muddies the waters somewhat. I was glad to read that like me, you have a wonderfully supportive husband. Cherish him, as they make a huge difference. 😀

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  20. Wish I knew your name i like using peoples names, its respectful and honouring. I too have suffered an invisible disease for decades! Always alone even in a crowd, never feeling wanted loved or cared for… Maybe its just me… Never the less. Thank you for following me I want to honour you and if in some small way bless you! This post is so true, I get what you are saying I come from a huge family and still am alone. The weirdest thing about that is my kids seem more like my sibs than what I thought my kids would be, they are over 18 now and huh ?????? Where is the fantastic “Love” we all dream about and want in our lives? Beats me! Im a giver, maybe you only get what you “TAKE” but that seems so wrong! Thanks for sharing, I have been diagnosed with Fibro decades ago but I think it might be more like MS, and lately it defiantly seems like both and then some. Gotta keep hanging on right !

    Hubert

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    • Hi there, my names Pamela or Pam, I don’t mind either. Fibro can be horrid, I know of some who have just Fibro and are also housebound and wheelchair bound as I am now. It might be worth going back to your doctor and ask to be reaccessed. This post is a “sticky” but if you scroll down and story continues. There maybe more clues, that might help you.

      Take care 🙂

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  21. Hi, Pam! I wish to thank you for following my new blog, having enabled me to find you and your inspiring story! Even if only a small dose of my content is related to my own invisible illness, a part of my own story is written in the “Something About Me” section, unfortunately also woven around such a condition and other difficulties, which I still cannot accept and explain being the type of person that I am and not finding many who can understand what’s hidden behind the smile! Thank you so much for sharing yours, together with all the hints and information! Wishing you the best of luck and please take care 🙂

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    • To me, our conditions are almost irrelevant. Yes, medically they matter and their symptoms influence our lives, but all of us slowly discover that what we share so much. Our lifestyles, our struggles, the impacts on work, coming to term with what is happening to us and how it affects our families and those who we love, is often almost identical. In other words, those of us with any chronic illness, travel the same path.

      Take care and stop by, any time 🙂

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  22. I love that you tell your truth! I offer my truths as well, and allow my peers to find theirs. If my words or my research blogged offers them any hope, ideas, or ability to relate, that’s a bonus. I have become much more limited in the last two+ years. I and my loved ones are not yet accepting of me not being the organized glue, but the thread. However, from what I know about thread, it is mighty!
    XX Lucinda

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  24. As a fellow MS fighter, my thoughts are with you. Being housebound changed my life, but I have adapted. However, I’m lucky as I had lived most of my working life free of MS – just retired a few years early because of it. Love and light.

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  26. I being living with fibromyalgia & manic depression & memory loss, elbow damage in both arms, carpal tunnel in both hands, muscle atrophy in both legs which is not limited to numbness in my legs, chronic lumber strain. Just found out last year I have a heart condition (not afib) that could make me have a stroke at anytime. I will not let any of these destroy who I am or let run/ruin my life. I consider this a learning experience to help other understand what I am going through &help create awareness to all. You deserve a GAINT hug. I feel for you & wish you the best. Your in my heart and prayers. If we all stick together we can fight whatever comes at us.

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  27. Hi there love! Thank you so much for following my blog about chronic illness (gastroparesis and achalasia), your blog is impressive. Your writing style is absolutely great and impressive and I hope to haved a blog as great as yours one day.
    Keep up the good work!

    Pascalle J.M. ❤

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  28. ““Being housebound is no worse than being earthbound”” Love this! Going to make this a mantra for myself! Your writing and determination are inspiring to this fellow spoonie.

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  29. Pingback: Living in a limited world (an introduction) – miko hargett

  30. Comment by: Stephen Walker

    Earthbound and happy with it – Mars is not a very hospitable place.

    RRMS since 2011! How is your condition now? I hope it has stabilised.

    My RRMS, which I think is now SPMS, has been steadied by changing my diet. I have done a Wahls Protocol Review of the book that I think has turned my MS prognosis around.

    I was diagnosed in 1994 although, with hindsight, I have had for many years before that.

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  31. I really enjoyed reading your post and a big thank you for the visit..I hope that you visit more often …i also have chronic diseases and so much more that I have not put on my blog…I am working on more ” me time” so I can blog and do more things I enjoy…
    Again I hope to read more about you…Remember that you are not alone..
    Suzette

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  32. I am new to your blog and wish you all the best! I haven’t read your whole blog, just your most recent entry, but I look forward to reading though your entries. If you haven’t already, you should read Terry Wahls book, The Wahs Protocol. It’s all about how she came out on top of her MS. She was wheelchair bound until she started researching cellullar health and literally reversed many of her symptoms. It’s truly an amazing story and might give you some further hope and insight. Looking forward to reading more about your journey! xoxo

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    • Thank you for joining me, I warn you, though, that until very recently I wrote daily, for the past four years. Reading my back entries might take longer than you thought.

      I haven’t read that book, but I have read many on a similar vain. If I can I will take a look though. Thank you for telling me about it. 🙂

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    • Comment by: Stephen Walker

      Hi Pamela and Joanna,

      I concur with Joanna from timewithlymeme. Dr Terry Wahls book is, or was for me, revelationary in understanding how my MS was affecting my body.

      I may well have promoted my review of the Wahls Protocol on your blog before but, there’s no harm in repitition.

      It works well for me, when I manage to stick to it.

      Liked by 1 person

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      • I found one thing in your review rather interesting, as I didn’t eat dairy at all for years. It has only been in the past 2 years that I started eating it again and to be honest, I haven’t noticed my health getting worse any faster. In fact, the spell that my health was most vigorous, pre Chemo, I ate little other than raw vegetables and fruit. Which is why I am always so dubious about diet having any implication on my PRMS. Clearly diet is important for all, but it’s affect on the conditions that I have, for me, doubtful.

        I now eat whatever it is I fancy, which is still more than healthy, compared to most. I decided to enjoy food for the time I had left. Top on my list, as Adam puts it, “Smelly cheese”, to me it’s heavenly. No matter what, now, food has to bring with it, pleasure. I guess we all have to make our choices and be happy with them.

        I am glad though that it has helped you 🙂

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  33. Comment by: Stephen Walker

    Hi Pamela,

    I am sorry to hear that foregoing your favourite “smelly cheese” didn’t help with your MS. But, multiple sclerosis is different for each of us and what works for one will not necessarily work for another.

    I see you make mention of your PRMS which suggests, to me, Primary Remitting? Is that correct or am I just being a numbskull?

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    • Sorry no, it Progressive Relapsing, just means I have the worst of both worlds. On the upside, there isn’t a single MS drug that works for it, so I have no nasty injections or drugs that screw up your life to take daily. Nothing other than pain control. That’s why I had Chemo. You can only have it once, but it was truly amazing for me. Every 4 months for three years. Not only did it stop progression, I actually allowed some healing as well, it was like turning the clock back. Clearly it didn’t last, but my progression was slowed down. It bought me several years of life. 🙂

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  36. Having a chronic illness can be such a painful process for one to go through. While those who don’t experience it may not know how it feel, being emphathetic is important. Show that you truly care and try to understand the situation before passing out judgement. 😊

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  37. Robert
    Your challenges, your strength, your commitment, your openness, your sense of humor, your driving advocacy work and your life never stops amazing me. No doubt we’ll see you on bookshelves, if it’s your desire. You are a gem!
    M

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  40. Pingback: Living in a limited world (an introduction) | ram11273's Blog

  41. It is very true what you say that “Being housebound is no worse than being earthbound” Hope to hear more inspiration from your blog. Thank you

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  42. I’m heartened that you have kept writing, with my husband’s disability I’ve found that no one ever really understands what it is like and you’re right, they have many preconceptions and assumptions about it.

    Thank you for finding my post, because now I have found yours.
    I wish you all the best and look forward to reading your posts.

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    • Thank you and I’m glad you took the time to read some of my blog. I now only write every second day, things were getting too much for me, but I still stick to my rule, there is nothing here but the truth of living with chronic illness.

      I have found that writing, is actually a great therapy, so I hope you continue to write about your coming to terms with your husbands health. We all need an outlet.

      Take care (((Hugs)))

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  43. Sorry it has taken me so long to find you. Thank you for all your support since I ventured into blogging about my illness, I am a bit slow. I found you on Twitter today too so I’m also following you there 🙂 … we really are a vital community. I can sit here in “My Office” (bed, lol) and chat away and connect with people who hear me and who I nod nod nod to as I read their (your) words! Love Jenn 🙂

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  44. Thank you for reading through my post, just read your story hear and wow, aren’t you a wonderful courageous lady, an example to many and it’s true, there is no reason why we should hide the thruth…I sometimes still do it too often, hiding my pain with a smile, but then again, it’s a bit of therapy too, it’s all in finding the right balance and depends on whom I’m talking to, people who are genuinely interested or concerned or not. Most people who know me a bit you know by looking at me or hearing me on the phone if it’s a good day or not though to perfect strangers I look quite normal…the curse of an invisible chronic illness right?! Stay strong, stay positive, keep writing, big hug😘

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    • Everything in life is a case of gauging what is appropriate, but the most common thing I hear from others is they just want some understanding. The only way that I see strangers understanding out illnesses, is if we educate them. In time, invisible or not, maybe we will all find that understanding many crave for. 🙂

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  47. Wow. Just wow. I feel like you are my twin. And I love the featured image on this blog!! It couldn’t be more accurate! That I am aware of, you are the first person that I have met that has been chronically ill for longer than myself. And you’re wiser. And more majestic. I feel like I’ve found a kindred spirit! I mean that in the most complimentary, mystical, and majestical way. I’m probably going to go ahead and read every single thing you’ve ever written.

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  48. Hi. I don’t remember seeing this post in the past, but my memory has been affected. Anyway, I love the images and quotes about what others think. Wow. Same as my life!

    I think having family who refuse to get on board with the effects of “invisible illness,” and utterly disabling conditions that I live with, mostly silently, hurts as much as anything. I have Roscoe now, and he has saved my life. Several times. I was so ready to give up and instead, went to the shelter. He has loved me like no tomorrow! Thank goodness the dog park is close by. Even that is hard because I’m often over stimulated by the people there, but Roscoe loves running with dogs.

    Thanks for your like on my blog. I hope today is a good day for you, and if not, I hope it is peaceful.

    Cheers,
    Michelle (dogkisses).

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    • Dogs are amazing creatures, I just wish that I was able to have one, but before I was ill, life was too busy and I didn’t have the time needed to dedicate to the commitment required. Now I have the time, but I don’t have the energy. Your lucky, so lucky to have found a faithful companion who see you, not your health, and loves you just as you are.

      Stay strong and stay happy (((Hugs)))

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      • Well, I don’t think I can keep Roscoe. This makes me very sad. I think that’s why it took me so long to introduce him, as I’ve had him eight months, seven of which I’ve dealt with a new case of Rocky Mountain Spotted Fever, which left me with more fatigue. Roscoe is a hound and town life is not suiting him. I kept thinking he would adapt, but he hasn’t. I suppose I will write a new post about this, but I had a consult with my vet today. He said he wouldn’t hesitate to return him. Oh, if it was only that easy. My heart is heavy.

        Liked by 1 person

      • Thanks. There are many days when I think I must find him a different home, more rural where he has space. Then night falls, and I see what a great dog I have. I keep trying. The only way to make it is to get to the dog park. It’s not too far. But, you are right. We do have to take care of ourselves before we can others. Such a hard lesson for me.

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  49. Pingback: Living in a limited world (an introduction) – Wag 'n Bietjie

  50. I’ve followed you here from Twitter, Pamela, mostly because your bold statement on the site intrigued and impressed me a great deal. Despite your debilitating illness you’ve remained very positive about things and determined not to let it ruin your life. Your approach does you proud and is an inspiration to us all to enjoy life as well as we can and face difficulties head-on instead of whining when things go wrong. Lovely too meet you Pamela, and I’ll look forward to your future posts. 🙂

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