Guys!!! I think I’m still in here somewhere!

This illness is turning out to be a very strange journey and is the most difficult thing I have ever had to tackle in my life. A game of two halves.

I feel like I am two people, the sick patient and then Rosie, the wife, mother, lawyer, person. The connection is weak and I feel torn in two.

Consider this; when discussing with my therapist the possibility of cutting down on the time I spend in hospital, she suggests instead I should think about becoming an inpatient (erm…no), yet at the weekend with my family, my illness is not referred to. I feel I am ill, yet not ill. A broken leg or a cancer would be evident and those around me would make changes to accommodate, but my illness feels unmentionable; it is the elephant in the room and people are afraid to even ask, ‘how are you?’ Or ‘how’s the treatment going? If only they knew all I want to do is to talk about it, but this is a burden I do not want to drop on anyone. I feel trapped by the invisibility; yes I may be thin, but I seem ok, while inside I am screaming.

At home I can sometimes be me, yet my time in the hospital is almost hidden from view. There’s a huge part of me that no longer exists. I don’t have any self esteem while being cared for. I used to talk about work, my plans and hobbies, but I am now a non-person. I am grey and uninteresting. In the hospital am told what to eat and when. I am only allowed to use the toilets at specified times. I can’t go out and walk and walk which is what I really need to do. I have to fill in endless hours with colouring and puzzles. I am a professional woman, yet if someone were to buy me a new puzzle book I think I would cry with gratitude. This is what I have come to.

Discussing the possibility of hiring bikes to cycle round the city walls of Lucca with family no one bats an eyelid. I feel I need to do these things so I don’t let anyone down. Going out for lunch with a dietician in tow, (wake up, how strange does sound people?!), I mention this plan and get a very firm response; this is not acceptable. If I am honest, the whole holiday is deemed unacceptable by the medics yet in the other half of my life it is simply a fun trip. Again, I am torn in two. What is right and what is not? I no longer know.

The agony of knowing that there is so much to do around the house, there is always a pile of ironing, weeding, cleaning, washing, bed changing….constantly being told that I should not be doing these things feels so combative yet how can I leave my poor husband to do everything ? I am forever worrying about what needs doing, and feeling guilty that I should be doing them, yet knowing that to recover, I should be doing nothing. Guilt abounds either way.

The turning of relationships from the carer and planner to the cared for, whose sickness is unmentionable. The painful parallels with childhood. The constant panic that I have ruined my career, and that I will never be successful again. I am working harder than I ever have to come to terms with these things and to recover, and yet I am doing nothing.

Another week looms, here we go again….

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10 thoughts on “Guys!!! I think I’m still in here somewhere!”

  1. This is very interesting because I am pretty sure that some people don’t mention your illness or ask you how you are not because they don’t care or aren’t interested, but that they are unsure how the conversation will go and whether whatever thoughts they have will appear trite.

    Before seeing you last time I wanted to say the following, but it didn’t arise – was that because conversation was around other things or I didn’t pluck up courage – or a bit of both?

    “From your blogs it looks like eating is treated at the clinic as a chore, something to endure and its all stick and no carrot (no pun, honest). Its insisting you eat this, drink that, do not eat that, count this, weigh that – all eating seems regimented and no fun AT ALL!

    Has anyone considered trying to make eating interesting or fun or perhaps introduce cooking and preparing food? I wonder if baking bread at the clinic in the morning and eating it in the afternoon would change the approach and turn it from a chore to a pleasurable experience?”

    … but then again, what do I know? Nothing really and I can imagine the answer being “don’t be silly, its not ABOUT food, its not the food, its the control or for other people here its not the food, its the body image”

    So, its difficult with no knowledge to be sure what to say and whether it would help or not, but next time I’ll certainly ask some open questions and hopefully not over-share my ignorance of the issue.

    Meanwhile, go and get on that bike – there’s four on board so you don’t have to even cycle, just ask your sister!!! 🙂

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  2. Thank you for your sensitive and thoughtful comments – I can appreciate that it must be difficult for people to make contact for fear of saying the wrong thing but I really am happy to talk if people want to listen though I can understand that not everyone does!
    You’re right, there is not a lot about the unit that is fun based – the staff are even told not to dance or sing as this is deemed inappropriate. I end up making light as I do but this too can be seen as subversive or as an unhealthy diversion. The routine is heavily based around reward and punishment and control but I guess (and hope) they know what they are doing !

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  3. That difference between the Unit and not must be very trying, and I’m so glad that you are able to have that time of semi-normality at home. I really find if interesting and helpful talking to you about what you’ve been experiencing and are feeling when you get home, and I hope you do too.

    So, guys: there’s the gauntlet thrown down. Ask! If the answer’s “Thanks, but not now” then so be it! But at least everyone will see the elephant then!

    Rosie: you’re doing great, and no-one’s forgotten you are a professional woman, wife, mother, fun-to-be-with person.

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  4. Oh rosie what do we know? This is your journey but through sharing your blog, we are walking it with you. I look forward to each installment because it helps me to understand. When I had cancer I just needed to know that people were thinking of me and loving me, even if that wasn’t a physical or tangible act. You are still in there. Don’t let this illness define you. It will certainly change you and all those it immediately impacts. But you aren’t a patient with an eating disorder. You are rosie. A strong, intelligent, beautiful mother, wife and friend who happens to be having a blip. This is life. I HATE superficial. Life isn’t about achievements, appearance or wealth. It is about humanity. About life and death. About mortality. About compassion. And depth. And honesty. If I could help you in any way through this journey I would. Without hesitation. I might not have the right words. I might not understand your relationship with food. But I care. We care. And we want you to get better to live your life to the full. Keep sharing. Keep analysing. Keep going and focus on the end goal which is a healthier you who walks and runs and laughs and enjoys food. Let us know when you feel ready to tackle a curry and if you need some alpaca therapy you have my number. Love to you and yours. You WILL get there xxxx

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    1. Thank you so much and yes, I’ll look forward to that curry! I may well take you up on the alpaca-time and bring the rest of the clinic with me!! I have met some incredible people along the way. I hate superficial too though it’s all too easy to pretend there’s nothing wrong – it’s just such a waste of time. It’s great to know you’re out there for me – it means such a lot and just gives me that extra bit of strengths to tackle another day 😊

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  5. You will always be the professional woman I look up to, the beautiful mother, the fun and fantastic friend and the silly and lighthearted person we all love. This illness doesn’t define you or make you a different person. It is a part of our lives at the moment, but that will not ever change how any of us think of you, I am look at how you deal with this and think you are bloody brilliant in every way.
    😊
    Love you to the end of the world
    xoxo

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    1. Thank you and I love you to the moon and back (twice) I am proud every moment of every day that you are the crazy, loving, funny and incredibly brainy person that makes you Kate. And that you question every rule, then make up your own mind and go your own way. #womeninsciencerock

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  6. Dear Rosie, I wish I could have written a similar post to those above. Whilst I cannot express myself in the same way, I care about you, think about you often and long for you to be well, happy and at peace with yourself. xxxx

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