Lately I’ve been reflecting on just how far I’ve come with my ostomy. I’ve been going without my medication – under the guidance of my IBD team – for a five months now and I’m feeling wistful.
This hasn’t happened before. It’s unchartered territory for not only me, but my partner too.
So just how do you juggle having IBD, an ostomy and living with a partner?
Good question huh? Let’s get into it with some background:
- My partner and I have been together since 2012, only six months after I was diagnosed with Crohn’s Disease.
- I was, at that point, on bi weekly Humira injections.
- Since then, I’ve going through six different treatment changes – with side effects galore – and three very big surgeries too.
- We moved in together in the Autumn of 2018.
- Up until that point we lived at our respective parents houses; he then moved in with a old friend and I relocated.
- We’ve both going through a couple job changes in this time frame too.
So how does all this impact us? Well in the long term, it has been great to see just how supportive and loyal this guy is to me. Take away my invisible illness; he is just a chilled out but energetic guy – much like a puppy! His words not mine! – so getting on well together was never a problem. But unfortunately, you add in an long term health condition and it gets abit more complicated.
Having CD – or indeed any chronic illness – can be like a pendulum swing – good to bad and back to good again. We’ve had challenges when it comes to my CD; spending days in the hospital for medications, appointments, procedures, the fall out from long waiting times, complications from surgeries, side effects of medication and my own general emotional health has had a HUGE impact on our life together.
We have spent years getting into a good routine and rythm of trying to predict my illness and plan ahead only to realise that that is some what impossible at times! We now appreciate and plan for rest and relaxtion – it’s become a better balance and prepares us both for harder days.
So what would be my main takeaways from how to manage and cope with living with someone when you have a chronic illness and they don’t?
1. Managing pain
Pain can and sometimes will, affect most of my daily routine. For low pain days, I can go about my day without too much discomfort or need to for change in my routine. In these days, it’s easier to achknowledge my pain and being able to ‘push through’ and work around it. I still have to take breaks but I can do more, this way.
On high pain days, I need to ask for help. Asking for help has always been a challenge for me, so I tend to just ASK outright for help when I need it, from the get go. Luckily, these days are few and far between since my last surgery, but during it I was needing help each day getting up, having my dressing changed and mobility.
When it comes to communicating about pain, I will say just be honest about it. My pain level tends to make me very grumpy and stubborn which my partner has gotten better at respecting and knowing about – so that he doesn’t take my words too harshly. With this, I will always say apologise too if you know this happens to you. It is not an excuse nor is it a way to verbally abuse your partner but words can and do hurt when you are in pain.
Our partners can see what our illness is doing to us, but they can not feel it. And pain is very subjective and difficult to manage at times, even making us more stressed. So feeling safe enough to communicate well and effectively in these circumstance will be a skill in itself. That is not to say that we don’t have moments where we snap; we do. But we work through it.
2. Managing household
In good health days, I am able to spend time and effort doing most of the household chores – I am very house proud. But some things I can not physically do – thanks to my ostomy – so rely on my partner for his strength to do this.
Do not push yourself further than you need to and risk your body and health over a chore. At times, it is simply too much, too exhausting or too overwhelming to do chores – I have been guilty of this. Perfection is not what makes a home.
Divide and conquer is my best advice; know what needs to be done and get it done between you when your schedule allows you to do so. A gentle reminder has gone along way to getting us into a rhythm of doing X, Y and Z on weekends when we have time, after working all week.
3. Managing working
We keep a joint board of our work schedules and appointments in our kitchen so we know what is happening during the week ahead. My partner does on call nights and weekends on a rota, so planning around this helps. It took us a while to get this part down – I plan most of home life around his work rota: meal planning, trips out, deliveries and my own blogging too.
When I am not working, it does get harder, I will admit that. A part of me feels guilty for not being able to work and the burden falling to him, but communicating through these times have been the most important to us. We check with each other about what is best to do and agree on a plan, important when I’ve got medical things to negotiate around.
However, when I do work, I still apply the same plan to managing work and home. I do add in extra time for ‘self care’ and me time, alone; so that I am not burning myself out and pull myself away from things that don’t help me feel great.
Sex seems to be what most people believe intimacy focuses around but it’s not. So many of my medical decisions have implications on my sex life and indeed how I choose to be and how I feel about intimacy.
Sharing my life – by showing what makes me vulnerable and my own idiosyncrasies – is what allows me to be intimate with my partner.
Sex is just a part of being intimate with someone. Because when you have an illness, being physical sometimes just isn’t possible for a while. I’ve gone through three major recovery periods after surgery and the last thing on my mind was sex. And even when it was there, I was concerned and confused. I was in pain, my anatomy was different and lets be honest; I was thinking about my bag.
My advice is here is that while sex is a small part of being intimate with someone being able to talk about it is huge. Either in a new or an established relationship it can help move you forward to feeling more comfortable about the whole concept of intimacy.
A partner who understands your medical issues will respect your decision to postpone sex as part of intimacy.
I found allowing myself to let someone in to my life – to see me at my most vulnerable – was important to opening a good dialogue to communicate about intimacy, and ultimately sex.
Being intimate can be anything you choose it to be: spending time being close, spending your nights in the same bed (sometimes hard when you’re fatigued, in pain or experiencing medication side effects) or even just talking. It can be as light or as deep as you want it to be.
Living with a chronic illness is abit of a weird curveball. It can look and feel like life before diagnosis, but it isn’t. This isn’t simply good or bad, it’s just different. I’ve never given it much thought, that I would find someone I love so soon after being diagnosed, much less than he would stick around.
My outlook on life changed on finding out the meaning of what having CD meant to me. And when I met my partner, there was no awkward Louise, there was no hesitation and no shyness; like there had been. I just happened upon someone who had the same life view that I did.
For the most part, we’ve become much more flexible in how we choose to life and when we do that, with my CD in tow. We are non traditional, meaning we don’t want to get married or have children; we are happy just being together.
It’s really cliched but not having good health has made me appreciate and respect my life much more.
Do you have any questions or queries? Or just want to share your own experiences?