As you may have read in my story of how Nick and I met and how we got to where we are now, Nick and I have known each other since we were 14, long before he had MS. We got back together about a year or so ago, and I jumped into the relationship knowing that Nick had Relapsing Remitting MS (and Crohn’s Disease – another chronic illness and auto immune disease), and from doing my research and talking a lot to Nick, I knew as much as I could at that point. I chose Nick, with or without chronic illness; you could argue its changed his life for the bad, you could argue its changed him for the better – who knows… but for me, he is just Nick, and that’s what I chose.
In the time we have been together, Nick has suffered one of the worst years he has had with MS (I am assured there is no correlation!!); he has had at least 3 medical relapses and is now waiting for a second line DMT. In this time I have learned a lot about MS, about Nick, about myself, and about being a partner of someone with chronic illness, so I wanted to share my thoughts.
1. Take the mood swings with a pinch of salt, but take them really seriously too.
Sometimes someone dealing with chronic illness or pain will have mood swings which are, really, completely understandable and justified. They’re dealing with symptoms in spades; untold discomfort, weird sensations, unpleasant toilet issues, memory loss, numbness and horrible relentless tingling (no, its not just pins and needles) on a par with an ant’s nest boosted with caffeine or something much stronger, fatigue that is like walking through half dried cement until you get to a red brick wall 40 feet high. These are uncomfortable and frustrating symptoms to say the least – debilitating at the worst… its not surprising that a person suffering with this will be a little down-hearted, depressed, or just completely pissed off.
So when I say, “take them with a pinch of salt”, I mean don’t take the mood swings personally. And when I say, “take them really seriously too”, I mean take the time to think about and ask your partner if there is something wrong. Is there something specific that can be helped; a new symptom or pain, a side effect of some new meds, does he need something? Can you help her with something? More often than not the answer may be “no”, or “I don’t know”, but she will probably appreciate you asking anyway. If your partner, friend or family member is not sure what is wrong or what they need, you could suggest they get some fresh air, drink some water or a favourite tea, have a healthy snack, take a nap, have a bath, call a good friend, do some gentle exercise, or indulge in a favourite film or hobby for a little while and see if it helps relieve their tension.
Equally if you’re struggling to deal with the mood swings, go ahead and take a break and you do one of the above yourself and just gently suggest to your partner that they might benefit from reading no.1 in this article.
2. You cannot change it.
I know. It really, really, really sucks. When you love someone you want to take away all their pain and suffering – make it all go away, make them better… we all want the people you love to be happy and healthy… but when you love someone with a chronic illness, especially one such as MS, which is so unpredictable and exhibits so many varying symptoms, you have to give up that request to god, the universe, the powers that be, whoever you subscribe to… you have to find some acceptance that this is the situation – it is not going to go away any time soon… but like ANY circumstance, there are good days and bad days – sometimes there are good hours and bad hours within a day or night, sometimes there are good years and bad years… its all relative, all about your perspective, but making the absolute best of what I can when I can is how I deal with it -there is always something to smile about – some crack of light in the most broken of moments.
Whether, like me, you signed up to a life with a spoonie (someone with a chronic illness) or whether its happened along the way and you’ve done a good thing and stuck around, acceptance is one of the toughest parts. Sometimes you might find yourself screaming into a pillow, “WHY WHY WHY??” – so many whys… you might wish you could just be like every other couple and stay up all night talking, or effortlessly decorate a house, or be able to walk your dogs together every afternoon, go out on a date and not worry about a thing… sometimes you feel like you would do anything to take away their pain and maybe even start bargaining the universe for it… acceptance is hard, and as a relative “newbie” to this game, sometimes I think I’ve found it and other times I’m not sure… but I do know I can’t change this particular part of our life, but that doesn’t mean we can’t change other things. MS makes things tricky; sometimes a little, sometimes a lot, but there is always a way to move forward and do the things we want to.
3. Become and Expert on Your Partner’s Chronic Illness
I like to know about things I am involved with – the more I understand about whatever it is, the more in control I feel about the situation. When my son was born I delved into books about parenting philosophies, the science of breastfeeding, attachment parenting, the fourth trimester, feeding, baby-wearing, and so much more – babies are like a whole other species, honestly!! Being armed with information, while stuck in a brand new abyss of fear and potential disaster, I felt much more able to make the right decisions for my children, be it to do with their health, comfort, or development. Information is power.
That statement is true for anything. So whether your partner is just diagnosed, you have just started a relationship with someone with a chronic illness, or you are years down the line and feeling a little lost; research, learn and find information relevant to you. It will help you understand the overall condition and prognosis, the symptoms and difficulties your partner may be facing, and the ways in which you can overcome them. Research their meds to see what side effects they might have, look at new upcoming treatments that might be available, read about natural and alternative therapies you could try, or changes to your diet. Find good quality web sources of information and delve in. Being able to understand the whys and hows of such unpredictable illnesses can really help you to feel in control and help you help your partner with decision making and lifestyle changes. It will only empower you both, and that is a great thing in the world of chronic illness that can feel so hopeless at times.
4. Become an Expert on Your Partner
Maybe this sounds obvious… Maybe not. I’ve been in a few relationships where I thought I really knew that person, but I didn’t – I knew them in a few moments and that was all. Really knowing someone is knowing their past, their present and their future; their fears, friends, stories, dreams, goals, dislikes, favourite things, stress triggers, hopes, beliefs… what each face they pull means, what each tone of their voice means, that the eye roll was sarcastic not angry, that the blinking and looking away was so you didn’t see her cry, that his smile hiding away in the childish pout was asking for attention… Its knowing every little nuance, crevice, eye movement, moment of silence. I suppose that’s my romantic notion of it anyway…
But being with someone with a chronic illness means knowing them in a different way too… you have to know (or at least have it written down) their medical history, their doctor’s name, the meds they are taking (and that could be a long list), the meds they used to take, the symptoms they most commonly get, the symptoms they get sometimes but not often, the symptoms they had once… the way they react to different drugs, any allergies they have, any food intolerances they have… You have to get to know the things that might trigger a relapse: stress, anxiety, food, heat, too much, too little, lack of rest, not enough exercise; the list goes on… that’s why you need to be an expert on your person, because otherwise the list really does just go on and on and on.
If you are new to this crazy world of chronic illness, and maybe even if you’re not, all that up there might sound really overwhelming, and I suppose it is. But firstly, the chances are you will have other people around you that will know this stuff too; it does not just need to be your responsibility. Secondly, its not a test, write down whatever you need to and keep it in a safe place. Thirdly, it all comes in time – Nick and I have been thrown into a few situations this year which have meant I have learned an awful lot of his medical history, and where I’ve experienced pretty much all of Nick’s existing MS symptoms and some new ones too (some might call it a baptism of fire), so I have learned a lot, and quickly! But if Nick had had a good year of remission I would not be so knowledgeable on a lot of things. It takes time to get to know someone in any way, but the best way is for both parties to be open and honest, compassionate and caring, and to listen to each other. For all of us everyday, every year will bring something different, but being an “expert” on your loved one can help. Pay attention to your partner and support them, go to appointments with them, make notes of anything you feel is important, talk to your partner and their support system about everything. Its most certainly a team effort!
5. Learn How to Be an Advocate
You would hope this does not happen very often, if at all, but there may be a time that you have to advocate for your partner because they are unable to communicate their own needs. I had read that people with MS can have speech difficulties but as it wasn’t a symptom Nick had ever dealt with I hadn’t given it a lot of thought. Until the day he woke up completely unable to speak.
I could see the fear all over his face when he realised he could not say a word, and I cried with him as I hugged him tightly. Can you imagine waking up one morning and just not being able to speak at all? I won’t go into what happened on this day here because its a long story, but in short Nick and I managed to communicate through me asking him questions, and through him typing a few things on his phone, and we eventually ended up at the Accident and Emergency department of the hospital. It became clear through the nonsense of the day that we were able to communicate a little without talking – I could just understand him. And because the protocols the staff have to go through at the hospital I, along with his Mum, had to answer many many questions about his medical history, current well-being, symptoms and medication… but more than that I found myself feeling his frustration and pushing the staff for better service, and asking repeatedly for proper treatment and consultation. For the next few days I had to be Nick’s voice, booking appointments, consulting with his neurology team, explaining things to the MRI scanners, and talking to his family on the phone. I hate talking to strangers and I hate talking on the phone; I avoid it at all costs normally, but I knew I had to step up and be Nick’s voice for him.
His voice is back now, which I’m so glad about, but I know it could disappear at any time for any length of time and its my job to step in and be his advocate. There are many chronic illnesses where perhaps you may have to advocate on much greater level; and I cannot give advice on this – I will only say from what I know, that you have to be as open and honest as you can, when you can, so you know in your heart you can do what is best for your loved one.
I had planned to write 10 things that I learned in this post, but I have a tendency to go on a bit, so I am going to split it into two posts. Click here to read