Living with someone with a chronic illness

L has a chronic pain disorder amongst other illnesses.

I never in my darkest dreams imagined that someone could be in so much pain, in so many ways.

It’s mentally painful to watch someone you love struggle from the moment they wake up to the minute they manage to get to sleep.

L is wonderful in so many ways, her creativity blows me away. She is a talented artist, she has rescued and continues to adore reptiles.

We met in 2005, after I came to University here. I wanted some fish ornaments for my rapidly declining aquarium, and a friends sister worked where I could get them… It turned out to be L.

It makes me so angry at the universe that she struggles to even get out of bed, she takes more tablets than can fit in a tablet case.

Does it affect our relationship?

Of course it does. When you’re in the honey moon period, you never expect to become a carer, you don’t expect to have to arrange doctors and hospital appointments almost every week. But you also don’t expect to love that person in such a way that makes you feel it in your soul.

The one thing I wasn’t and will probably never be prepared for is the depression, it is soul destroying. To watch someone you love shrink like a dried chilli. To watch an illness suck such happiness out of everything she feels. To watch a dark cloud loom.

There are times when I’m frustrated, sad and just plain angry, but that doesn’t change how I feel about L as a person. There are times she makes me laugh until I cry, and I feel so much love my heart feels like it could burst.

L also has chronic insomnia, so when she does sleep it isn’t always at nighttime and we are like passing ships.

A partner with a chronic illness which is so debilitating can be so lonely, and exhausting. Being the strong one makes you feel like a ticking time bomb waiting for the universe just to bloody align so the washing is done, there’s milk in the fridge and you can lie on the sofa like cleopatra.

Maybe I should say I wouldn’t change it for the world, but I would. I would give anything to take her pain away. Anything.

If I could give 10 tips for dealing with a partner with any chronic illness they would be…

1. Always encourage them kindly, don’t nag or force.

2. Remember if they could do it, they would be doing it

3. Talk, be as open as possible

4. Online shopping is your friend

5. Don’t push yourself to your limits

6. A physical condition will have mental connotations. Encourage them to seek medical counselling or just talk to their gp.

7. Have fun. You’re still people, and still capable of having a good time.

8. Various medications have so many side effects, their mood might change, their tastes in food (L doesn’t like the taste of meat any more). Know what they are, and keep a list of medicines to hand incase of hospital appointments.

9. Try and make light of the situation, I used to joke that L could be a stand up comedian, now she jokes she would be the sitting down one, who would need an inhaler between jokes!

10. Look after yourself, self care is important, especially take vitamins to keep your immune system on the top of its game.

Sometimes it’s easier said than done.

Do you have any tips?

Love Sooz x

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20 Comments Add yours

  1. kbelvedere says:

    My husband is the one in your position in our relationship. He is a fixer too, and deals with all our health insurance stuff, which is super frustrating for him but almost impossible for me to follow. We try to switch off jobs based on what I can handle. Like, I can usually do kid’s bedtimes since I can lay down, and he can get some time. We also pay for convenience whenever we can afford it–get it delivered, pre-cooked, cleaned. Some days it feels almost normal!

    Liked by 2 people

    1. discoveringsooz says:

      Thankyou for commenting, I’m glad you have a supportive husband, and also know your own body’s limits. Love Sooz x

      Like

  2. These are very practical tips.
    You are also invited to joiN 31-DAY SELF-KINDNESS CHALLENGE on my blog!

    Liked by 1 person

  3. abhiray59 says:

    It takes so much courage to live with so much pain on a daily basis. It is almost as much distressing to be in a relationship with a person in pain. It needs a courage of conviction. God bless

    Liked by 2 people

    1. discoveringsooz says:

      Thankyou x

      Like

  4. Much love to you and L. First, just some love from a stranger on the interwebs. (((Hugs))) if wanted. Second, I only know a small piece of what you both deal with on a daily basis. And how to say I sort of understand without making it about me? Just… the waves from the years of living in constant pain still come to shore, even after the fact. Thanks for writing this.

    Liked by 2 people

    1. discoveringsooz says:

      Thank you for your comment, and love! I’m sorry you have experienced the daily life of pain, and hope things have eased a little. I always like to hear other people’s stories, or read! Thankyou again! Love Sooz x

      Liked by 2 people

  5. Oh, Sweet Sweet Word Addiction says:

    My sister has lupus and rheumatoid arthritis and suffers on the daily. She constantly struggles with pain on a daily but as a family me and my parents have helped her make it through her tough days. It’s hard to watch someone you love be in pain that we can’t take away or solve. Stay strong, stay a unit! ❤️

    Liked by 1 person

    1. discoveringsooz says:

      I’m sorry your sister has such ferocious chronic illnesses, I’m glad she has you guys xx

      Liked by 1 person

  6. swabby429 says:

    I encountered this situation following my step mom’s second stroke.

    Liked by 1 person

    1. discoveringsooz says:

      I’m sorry you encountered it. Lots of love x

      Liked by 1 person

  7. Reblogged this on Revolutionary Musings.

    Liked by 1 person

  8. Vanessa says:

    Such a important post to share. Thank you for sharing this with us

    Liked by 1 person

    1. discoveringsooz says:

      You’re more than welcome. Love Sooz x

      Liked by 1 person

  9. Thank you for the tips and the description from both perspectives.

    Liked by 1 person

    1. discoveringsooz says:

      Thankyou for commenting. Love Sooz x

      Like

  10. My boyfriend is in your position. I feel so awful that he has to endure this stress – I hope that we get married, but I know that is so much pressure on him. He loves me and does his patient and so incredibly patient. Patience is huge for me and forgiveness if I’m crabby.

    Liked by 2 people

    1. discoveringsooz says:

      He sounds like a lovely man, and you sound like a strong woman. I hope you do get married, and I wish you every bit of love in the world. Love Sooz x

      Liked by 1 person

  11. Great story – i understand as i lived with a chronic illness and seen my family suffer. Hopefully L gets better soon x

    Liked by 1 person

  12. simplywendi says:

    Thank you so much for giving those who love chronic pain warriors such good advice.

    Liked by 1 person

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