Relationships, chronic illness & intimacy.

This one is a requested post and the first time I’ve co-written a post! Since this post is about maintaining healthy relationships I’ve invited my partner to share his side of the story too. I will apologise now for elevated levels of sarcasm and any unnecessary use of puns featured in this blog post. Just to clarify quotes within this post are from Addz.

Addz and I are not experts or therapists of any kind, this is simply a few thoughts on how we’ve kept our relationship going despite my decline in health and they changes it has brought. Hopefully some other people will find this useful too.

Maintaining a healthy relationship can be really hard when one of you is reliant on the other for care. My partner Addz and I have been boyfriend and girlfriend for 7 years,  for the last 5 or so he has also been one of my carers. He helps me with personal care stuff like getting in and out of the bath and getting dressed, he also helps with daily living tasks like cooking and reminding me to take my pills. He carries heavy things (and not so heavy things), and assembles my wheelchair when we go out. Despite me needing a fair bit of help these days we’ve managed to keep the love alive. Our primary relationship is romantic with a bit of care stuff added in.

We sat and talked about this for a while before actually writing anything and the discussion was very interesting. Addz said ”I don’t see myself as a carer, to me a carer means doing most things for that person all the time, a carer does more than I do”. My personal opinion is pretty different, a carer is someone who helps with what the care-ee needs. I need help with cooking so Addz helps.  Addz says ”I know you need help with some stuff so I just do it, its instinctual. I know you might fall down so I’m always ready to catch.”

With us the ‘care’ instinct goes both ways. If I can help him in any way, I do. I’ll help patch him up after obstacle races or parkour accidents, I always carry antihistamines because I know he forgets he has allergies until he literally runs into the thing he’s allergic to.  We work as a partnership each individual has their own skill set, I suck at standing up and I can’t lift heavy things but I’m awesome at first aid and I carry everything but the kitchen sink in my handbag.. or rather Addz carrys my handbag..but I packed it..

We also try to make ‘care’ activities ‘romantic’ activities instead. I need help getting in and out of the bath, so instead of just lifting me in and leaving, Addz stays, we share a bath and I’ll wash his hair. (I do realise the logistics of sharing a bath make it basically impossible for some people but I’m super bendy and Addz doesn’t take up much space so it works for us) The idea is the same, it might not be in the bath but other activities can be shared.

Addz is a fitness fanatic and loves running, especially in the outdoors, I know he needs his own space but I also know that having shared interests is important. If he’s going for a run somewhere outdoorsy or somewhere pretty we’ll go together, then he can go off for a run and I’ll wander around with my camera until he’s worn himself out. This works in a couple of different ways, he gets his own space but then we can talk about our trip on the way home so we get a conversation too. We get home and I need a rest from wandering around, Addz also needs a rest so an afternoon of Netflix on the sofa meets both of our needs! Fatigue is much easier to deal with when you’re not alone.

With chronic illnesses and variable medical conditions it can be very difficult to make plans and even more difficult to keep them. Addz and I tent to schedule in ‘time’ for each other, we will make plans at the last-minute. We know we’ll spend next Wednesday together but we won’t decide what were doing until we wake up that day. On the rare occasions we do make plans its always good to have a backup. Last week we’d planned a picnic but I woke up feeling rubbish, Addz surprised me by taking me to a Gluten Free Gastro-pub instead. We parked 10 steps from the door and had comfy seats to sit on. We still got to share a meal but I wasn’t totally knackered, the chairs were comfy and someone else made the food!  Addz said ”We’ve learned to accept that if we plan things it might not always happen.” Sometimes I push through to make sure we can do a planned activity but it’s not aways worth it if I end up in a flare afterwards.

Another one of the key things we both pointed out was the communication. I never use clinical terminology when asking for help. I do my best to keep everything casual and sarcastic. I don’t refer to my family carers as my ‘carers’ they are my family…who happen to care too.

Addz I’ve had a fall and need assistance regaining my feet’ simply becomes ‘Addz I fell down again, help please’

‘I’ve dislocated my shoulder please assist me in relocating it’ sounds very clinical and impersonal whereas ‘Addz my arm fell off’  *point out problem arm and pull sad face*  is much more me. 

The only time I even refer to Addz and Mum as my carers is when I’m talking to people like the DWP and Social Services. People who need to know the extra lengths my family goes to look after me. 99% of the time they are simply my boyfriend and my Mum.

There is an element of self-fulfilling prophecy with relationships, if I call Addz my ‘carer’ he will eventually become my carer, just my carer.

Addz says ”If you introduce me/refer to me as your carer then I’ll start to think of myself as your carer, becoming your carer leaves less room for boyfriending. It’s like a ratio, I’m mostly boyfriend with a little bit of carer but ratios can change.”

Intimacy is one of the cornerstones of a relationship, its something that can easily be lost when the ‘carer’ role starts to creep in. By intimacy I don’t actually mean sex. Sex is great don’t get me wrong but it’s not an essential part of a relationship. There are plenty of happy couples who don’t have sex and plenty of couples who don’t do it very often. Sex with an EDSer has its own set of problems, dislocating hips, fatigue, and pain all put a damper on sexual urges. Addz is always happy to take things at my pace, even if that pace means no sex at all.  This is where the intimacy comes in, sex without love isn’t good sex as far as I’m concerned, Addz loves me enough to go without sex if my legs have fallen off…I love him enough to go without sex if he starts work at 4am the next morning. This doesn’t mean we don’t share any intimacy, we kiss and cuddle and never sleep on opposite sides of the bed so to speak. This isn’t just in bed, we’ll hold hands while I’m resting on the sofa, we kiss while waiting for the kettle to boil and we hug lots (hugging someone is a good way to avoid falling over too).

This is just a snapshot of our relationship so I hope it’s helped. If you have any question just ask we’ll happily answer.

Ciao for now folks!

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7 thoughts on “Relationships, chronic illness & intimacy.

  1. Thanks for the blog it’s nice to hear that you can have a healthy relationship were sex isn’t an issue , myself and my husband have been together 32 years married 29 of them we love each other so much and we kiss cuddle, sex is a task sometimes and difficult and also leaves me tired for the wrong reasons, we are happy to be comfortable with each other, he is my main carer you could say but also works full time but like you two I don’t see that I see him as my best friend, husband , I have chronic pain, fatigue , fibromyalgia other health issues , x x wouldn’t it be nice to live in a world were we was told that intamacy isn’t just sex it’s about relationships and how well we know and trust each other xx take care of each other my lovelies xx be happy xx

    1. I’m glad you have such a good realtionship with your husband. I do agree, intimacy is so much more than just sex and its not talked about enough!

      Best wishes to both of you 😀 Xx

  2. Sounds like you and your boyfriend have a great equal, relationship! Great advice! I too am blessed with a boyfriend who cares for me! Stopping by from Spoonie Bloggers and Vloggers!

  3. Thanks 🙂

    A lot of what you said we do too (and it’s interesting to note we have been together the same length of time) I do tend to refer to my partner as “xxx my partner and primary carer” to everyone we meet just to avoid confusion if I ask him to join me when going to the loo etc.

    he like your chap refuses to identify himself as a carer saying “I just stay home all day lounging incase you need me, rather than being on my feet doing stuff for you” but for me that is what I need, I need 24/7 supervision so that when I do need something there is someone there to do it or if I start to do something and I fall down or fall apart someone is there to finish it etc.

    I don’t think we schedule enough time for each other, we are together most/all of the time (SS give us 16.5 hours a week for personal care and respite) and he’s not great at planning so specific us time tends to get lost in the general domestic and care stuff 🙁

    It’s funny I’m the one that needs me time but until last week and a change in my wheelchair my me time was dependant on him taking me somewhere.

    It does help to know we are not the only ones going through this

    1. Thaks for sharing your story 🙂 its nice to know our experiennce isn’t unique 🙂 sounds like our relationships are pretty similar, my partner is the same he won’t do things for me unless I need help but I always have someone available if I do need help!

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