Going Dark

I’m not feeling too great at the minute.  Still.  My joints hurt so much, my wrists, hands, ankles, shoulders, hips… the pain is like a gnawing ache, and it moves around, floats from place to place in my body.  Isn’t that odd?

The tiredness is terrible.  I can’t wake in the mornings and then fall asleep all day, it’s the fatigue that is so hard to deal with.  The exhaustion makes me feel useless and like a sick person, it sucks out all energy, not just physically but mentally and emotionally.

I saw my GP this week and had some blood tests.  He suggested it could be a flare up of Ulcerative Colitis.  Isn’t that a joke! I thought removing my colon got rid of this bullshit but it turns out it’s all these ‘extra intestinal manifestations’ (I know this sounds like a ghostly poo but it means when the disease affects other parts of the body).

My eyes are so dry that I can’t open them in the mornings and they itch all day, my mouth is constantly dry no matter how much I drink.  My skin is dry, my legs are white with the skin coming away.

I’m going back next week for the results, if my inflammation markers are up then I potentially will have to have a course of steroids and go back under the gastro team at the hospital.  He also tested for Rheumatoid Arthritis to see if that is what is hurting my joints and so I just need to wait and see what he says on Wednesday.

Im not a great person to be around right now.  I don’t want to talk to people, I don’t want to go out.  I make myself do the things I have to do, but really want to just be hiding in the duvet cocoon.  The problem is because I talk so much normally (read: I’m a gobby cow), that when I feel hurt and sad, I go quiet and this worries those closest to me.  There’s a phrase on that TV series 24 when an agent turns off communications usually for their own safety or for the safety of those around them, it’s called ‘going dark’.

Going Dark: When an individual disappears or suddenly become unavailable or out of reach for an undefined period of time, generally for security reasons.

This describes me right now.  The only place I can deal with sharing at the moment is on my blog.  I know this can seem difficult for my husband and friends but it is all I have at the minute.

I feel so sad.  I thought all these surgeries would make me feel better (and I have to keep reminding myself that I AM better than I was) but it is hard to still be a sick person.  It’s silly because I always knew there was no cure for Ulcerative Colitis and that it is a life long chronic illness, an auto-immune disease that means my body is fighting itself.  But after everything I have been through, I just want a break.  I don’t want to be fucking ill anymore. I bloody hate being a poorly person.  I despise the burden I become to those around me.  I can’t stand that my lovely boy, the best person in my life, my husband Timm has to, yet again, bear the weight of my illness.

I’m sorry this post is so miserable.  I sometimes feel that I made a rod for my own back in being so god damned positive all the time!!! I feel I am letting people down when I feel sad.  But in a way, it helps.  I’m reading back all that advise that I give to others and remembering that I need to take it myself.

And so with that, I am going to try and treat myself a little better, sit in the sun, paint my nails, read a book.  Do the tiny things that I can manage that will ease my mind and warm my soul.

Thanks for reading

 

Sam x

 

32 replies
  1. africandream01
    africandream01 says:

    Oh my word . . . so sorry to hear you’re not feeling great right now. I’m amazed that you’re able to write to well under the circumstances.

    Wishing you a speedy recovery and hope the test results are not as bad as your brain is telling you right now.

    Reply
  2. Jane mccormick Not Half Right
    Jane mccormick Not Half Right says:

    Sorry to see you have hit a low patch…..the inevitable and unavoidable set back. Being chronically ill is a bitch….especially lonely and frustrating when a natural extravert ‘goes dark’. (I love that saying…absolutely spot on) Keep doing the small things and give yourself a huge clap on the back for even getting from the bed to the sofa…climbing Mount Everest is a piece of piss in comparison to achieving this on a bad day. What you are writing in this post is your reality right now and let’s face it being inspirational all the time is impossible and exhausting. No harm at all for people to see the other side that usually only our family gets to see. This too will pass Sam.
    Jane.

    Reply
  3. The Gutless Ninja
    The Gutless Ninja says:

    Sam, this is EXACTLY how I feel. I found myself nodding along to everything you’ve written. Surgery is supposed to make things better but it’s just plain sucky when that doesn’t happen. You really hit the nail on the head. Take all the time you need and put yourself first, lovely.. Those who love you will understand. You’re allowed to be human.
    Sending lots of love.

    Aisha xxx

    Reply
    • sam
      sam says:

      Thanks Aisha, when you are dealing with all the physical symptoms, the emotional and mental ones can knock you for six.

      Hope you are doing ok xxxx

      Reply
  4. Jo Knapp
    Jo Knapp says:

    Honestly you are a truly amazing person who is doing so much to highlight what your condition is and what you have to go through so that others may gain some knowledge about how to come to terms with what they have and that it doesnt have to mean you have to hide away and think you cant do things you did before – i am totally in awe of you i really am. However i can also see how you can become quite down (you cant always be expected to be “up” and smiley all the time can you – most of us know that feeling and we dont have half as much to deal with as you have. I also have a friend who has a life limiting condition who on the most part has the same attitude and strength as you do – would love to put you two in touch you could gee each other on (speaking of gee your friend Gee Smith is an old school friend of mine – love her to bits). Anyway must go work calling again – please take care of you – keep safe – lots of loving healing thoughts sent your way xxxxxx

    Reply
  5. Terri Clerck
    Terri Clerck says:

    Sorry to hear that you are feeling so rubbish at the moment. When you see the rheumatologist, ask them if it’s possible that you could have developed Sjogrens Syndrome http://www.arthritisresearchuk.org/arthritis-information/conditions/sjogrens-syndrome.aspx It is characterised by dry eyes and mouth etc but also manifests itself with fatigue, joint and muscle pains (amongst other lovely characteristics). I have got Sjogrens which now seems to have decided to attack my gut . . . that’s the way these autoimmune illnesses like to roll – always another surprise up its sleeve. I’ve only recently started following your blog but you always manage to say something thought-provoking whilst usually making me smile at the same time. You go and nurture yourself and take good care! x

    Reply
  6. Lou Townsend
    Lou Townsend says:

    Sam, I get the dry eyes overnight, although I can get it prescribed, you can also buy it over the counter. It’s called “Lacrilube” and you put in much like you would conjunctivitis medicine. It’s been a godsend for me. It’s not expensive so definitely worth giving it a try xxx

    Reply
  7. dpawson
    dpawson says:

    I heard (and dismissed) the idea of UC finding other ways to bug you.
    The joint pain? ditto. I’ve been diagnosed with arthritis – and am tempted to blame the steroids, which I now avoid at all costs.
    Lethargy? We’re told we don’t ingest some stuff we need (vitamins etc), I hope they check you out for that? Hope it’s not too straight forward that they ignore it.
    Get well soon ‘gobby cow’ 😉

    Reply
  8. Heather Cady
    Heather Cady says:

    Sam, thank you so much for sharing with us. Not only for you, but for us! You are always such an inspiration, and for those having dark days they may sometimes aspire to be more like you but can’t crawl out of their abyss. By sharing this you’ve shown that the dark days are part of this life as a chronically ill person. I try to be positive most of the time, too, because drowning in sorrow and anger is just not how I can survive. But when I feel the way you do, I allow it to embrace me. For awhile. I think we need to accept these feelings to live the rest of the time in a better frame of mind. My dear daughter and my BFF both allow me those quiet withdrawn days, and all I get is a quick “you okay?” from one or both of them. It’s part of the disease, it’s part of us. Impossible to be up all the time! Hang in there, crawl into your cocoon, and be kind to yourself. <3

    Reply
  9. Jaye Cole
    Jaye Cole says:

    Big hugs. I really don’t have much more to say than just HUGS.

    It is not easy to have a lifelong illness but it has made you such a strong advocate and in many bittersweet ways it has a blessing on the rest of the world that they now have your voice.

    So yeah… hugs.

    Reply
  10. Mrs TeePot (@MrsTeepot)
    Mrs TeePot (@MrsTeepot) says:

    You are allowed to feel this way. You are allowed to be angry, or sad, or frustrated or a million other things. You are not a burden though, please don’t feel that way.
    I hope that you start to feel better soon and the Drs can give you some help.

    Reply
  11. Anika
    Anika says:

    You are allowed not beeing the sunshine you usually are… Let the clouds cover you for a while and take comfort in them. You will know when to push them aside to let your positive attitude shine again. We are all just human…. Remember, your family and friends love you all the same

    Reply
  12. Stephen Dolle Neurosciences
    Stephen Dolle Neurosciences says:

    Hey Sam, I feel for you on this one as I’ve been battling some similar complaints. It sounds auto-immune. I agree blood tests will be helpful. I have been asked to speak in September on CAM therapies (alt medicine) and will be reviewing many of these for my presentation. I’ve had many amazing healing experiences over the years with some of these methods. I’ve even got a great story of a UK practitioner who helped to heal my non-believing father at an event. I’ll make sure to send you the link when finished. Best S.

    Reply
      • Stephen Dolle Neurosciences
        Stephen Dolle Neurosciences says:

        It stands for Complimentary and Alternative Medicine. It’s a newer accepted term for acupressure, acupuncture, hypnosis, etc. I’m told these treatments are more recognized in the UK compared to the U.S. The UK practitioner who helped my dad with swallowing difficulties after esophageal cancer used a mix of medical intuitive & hypnosis. These treatments have their merits.

        Reply
  13. bloggersas
    bloggersas says:

    Hate to hear your grief and I know exactly how you feel. The people who know you, really know you and the hand you are dealt with Crohn’s or colitis understand. Sure, you can be up and positive for everyone, but sometimes you need a cheering section of your own! I pray you feel better soon…these diseases like to shut us down for a while but we get back up!

    Reply

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  1. […] thank you all so much for all the wonderful messages I received after my last post (Going Dark), it means so much to know that there are so many people thinking of me.  I felt a little […]

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