I’ve often heard it said that when a person gets very sick, it can be almost as hard for the partner or spouse as it can for the person themselves. This is something I have thought about a lot lately. How difficult it must be to stand by and watch your partner suffer, knowing that you can’t make it better or take any of it away. I’m lucky, my illness isn’t life threatening * but it is certainly life changing; not just for me but for those closest to me as well. None more so than my husband. Now, those of you that know me know how uncomfortable I am with public displays of affection. In fact, I like to pretend I don’t even really like my husband that much at all. Keeps him on his toes you see. The rest of this post is going to be agony therefore because, dear reader, I am going to suspend my cynicism and discomfort and dedicate this whole post to my rather excellent husband.
My husband and I have been together for nine years after meeting/being set up by a mutual friend in the very glamorous, extremely romantic setting of Bamboogy Bar in Wigan. We married two years ago, sweating serenely under the Tuscan sun in the company of our nearest and dearest, and to be quite honest life has been a total laugh riot ever since. I sometimes wonder if he thinks I’m just putting the ‘in sickness and in health’ vow to the test a little extremely lately. (Either way, he passes on that one with flying colours. Which one should I test next?) It goes without saying that these first two years of our married lives have been more than a little bit challenging for both of us. So much has had to change in such a short space of time that it left us both reeling. Throughout all of it though, he has been such a constant source of comfort and support to me that I honestly don’t know how I would have coped without him. (Oh lord, if only you knew how much I cringed writing that – it was worse than having to kiss him in front of everyone at the wedding!)
When one person in a partnership becomes unwell, it inevitably changes the dynamics within the relationship. Even when one of you has a cold, the other naturally picks up the slack for a while. So when it’s something more serious, something chronic it means a lot of responsibility falling on the shoulders of one person. I was always independent and liked to do things for myself (ask my mum about my toddler tantrums) and am a bit of a perfectionist. So much so that it pains me to watch my husband do the dishes and not stack them in size order in the drainer, and don’t even get me started on way he ‘organised’ the spice cupboard in our new house. He on the other hand, is very laid back and couldn’t really care less about silly little details like a disorganised spice cupboard (the absolute sociopath). Over the past couple of years his role has transitioned from that of husband and some-time pest to carer, chef, cleaner, personal assistant, hairdresser and therapist - all rolled in to one handsome, red-haired package.
Monday to Friday he gets up, goes to work (teaching – which is exhausting at the very best of times), comes home and prepares dinner, does any housework that needs doing, gets his marking and planning done and then usually has to sit through my daily slide show of photos I took of the cat whilst bored at home all day, before then helping me to get ready for bed. Then on the weekends he does yet more housework, food shopping, more school work and if we’re lucky we manage to go out for a little mooch in the Hot Wheels, or a short walk if I’m feeling up to it. Then it’s back to a quiet, dark room for me to recover. What a fun wife he has! Sunday afternoons he spends batch-cooking so that I’ll have ready-made meals to eat during the week, because most days I’m not able to cook for myself from scratch.
On my bad days he has to help me bathe, wash my hair and dress and let me tell you, nothing spices up a marriage quite like your husband trying to pull your skinny jeans up over your arse and asking if they’ve shrunk in the wash. No dear, that’ll just be the carbs. On my very worst days at the beginning, he even had to help me to drink and feed myself because I simply didn’t have the strength or energy to lift a fork to my mouth. I am learning to manage much better but there are still days that he has to sit by whilst I struggle to keep a handle on my pain, and watch me cry with frustration when it all just gets a little too much. Somewhere in between all of that we try to make some time to just be a happily married couple in our early thirties.
My husband and I used to live very active lives; we cycled to work and back every day, spent our weekends hiking, we enjoyed camping and travelling together. I loved to outrun him in the park and he loved to avoid that by going out to play squash and football with his friends instead. It wasn’t just me that my illness took all of this from, it was him too. His life has been drastically changed by all of this as well and it takes its toll, mentally and emotionally. We’re both grieving for what has been lost and we are both working hard to stay positive every day, taking the small victories when and where we can. We are learning to live with our new normal, all the while not giving up hope that this is a temporary situation (the M.E, not the marriage!).
Looking after someone else’s needs 24/7 doesn’t leave much time for you to think about your own and sometimes when I look at him he just looks so exhausted that I could cry. There is so much guilt that comes with being chronically ill and despite his protestations, I worry that I’m holding him down and that being married to me is a drain on him. He doesn’t like it when I say things like this but it’s impossible not to feel this way sometimes. He rarely allows himself time to go out and just have some fun because he doesn’t want to leave me alone at home. I think sometimes he feels guilty about going out and enjoying life, when I’m stuck in the house unable to enjoy it much at all most of the time. Don’t get me wrong, of course we still have fun – how could we not, I’m a hoot! We are learning to enjoy the little things in life now like enjoying a coffee together in the back garden, doing crosswords or playing boardgames and of course being complete and utter die-hard Strictly Come Dancing fanatics (yes, we are 80 years old).
Of course it’s not always enough and there are days when our hiking boots are calling to us and we just want to be up a mountain, but he never complains or allows me to feel guilty about this. He just plods on, making sure life is as easy as possible for me. He is the very definition of a good egg.
So I guess what I’m trying to say is that if you know of anyone who is suffering with M.E or any other kind of chronic illness and you want to help, then don’t forget their partner for whom this journey is just as exhausting. Offer to take them out for a beer or a walk, whatever it is that they find fun and relaxing. Be a supportive shoulder to lean on. By helping them, you’re also helping the person suffering with the illness because the last thing we want is for our partners to not be able to enjoy life. To be honest, it’s nice to live vicariously through them sometimes too. Finally, if you would like my husband to live to see 32 you’ll offer to come round and help him organise that bloody spice cupboard.
*(Earlier I said that M.E isn’t life threatening and it isn’t, not at my stage anyway, but a young woman did pass away this year from severe M.E. Her name was Merryn Crofts and I think it’s important that people know about her. You can read about her here)
As some of you may know I recently travelled to Oslo to celebrate my brother’s wedding. It was a beautiful day and a great time was had by all. When my brother and his girlfriend initially announced their plans, I was excited – I had always wanted to go to Oslo and I couldn’t wait to celebrate their big day with them. With that excitement however, also came anxiety. How would I manage a big journey like this? How could I enjoy myself but not make myself ill? If you have a chronic illness like M.E then chances are you know very well that this feeling generally comes before any event, large or small. How will you pace it? How bad will the payback be? Is it even worth it? Of course there was no way on earth I would miss my own brother’s wedding, so here’s how we made it as M.E-friendly as possible.
1. Prep like a boss
This trip to Oslo was my first big journey since I flew back from Milan in February and I experienced a pretty big crash after that. I was determined that wouldn’t happen again, I wanted to be on my best form for the wedding day. My best advice to you, if you either have M.E or are travelling with someone who does, is to start organising and packing as early as you can. Write a list a week or two before of the things you’ll need to take with you and start to slowly pack what you can in small bursts to avoid over exerting yourself. Perhaps most importantly though, lean on those around you - even if packing seems like a low energy activity, it is still draining your battery so if someone else can do it for you, let them. In the week leading up to the trip I tried to do as little as humanly possible to conserve my energy for the journey, and I let other people pack my bags for me. Just maybe don’t tell airport security that…
If like me your mother happens to be a nurse at your GP and therefore acts as your medical secretary, then chances are that you’re already super organised with your medication. If not, then check your prescription(s) ahead of time to ensure you don’t run out half way through your trip. My family and my husband had to help me to remember to keep on top of my pain meds every 4 hours. I usually try to take the pain meds only when things get unbearable because they’re pretty strong and can sometimes make me feel a bit out of it, but I think it’s important when you’re exerting yourself more than usual to be extra vigilant at staying on top of your pain levels to avoid a crash. This really helped to make the whole trip more manageable and enjoyable. Turns out everything is easier to cope with when you’re high as a kite. (Joking, mum!)
2. Me and my Hot Wheels
As I would be travelling with my wheelchair, we made sure to book airport assistance for both journeys. I’d recommend this even if you have M.E but don’t regularly use a wheelchair, simply because you will save so much energy by avoiding the long walk to your gate and standing in long queues at security. Airports: another thing I never thought of as a particularly ‘athletic’ activity until now.
*Fun fact: evidence shows that 97% of M.E patients have some form of Orthostatic Intolerance. Which means that standing upright in one position for too long can lead to dizziness, weakness and nausea, which is why standing up in a queue for a long time can be tricky. I know what you’re thinking – is there no end to this rollercoaster of fun?!*
The assistance at Manchester wasn’t brilliant but at different airports I’ve been allowed to bypass queues and go to a separate security gate, which takes so much of the stress (and noise) out of the whole process (plus you feel like an absolute baller flippin’ the V’s to all the regular chumps as you breeze on past to the front of the queue. Who’s laughing now, you healthy losers!) It’s really easy to add assistance to your booking online and comes at no extra cost.
We also carefully researched the journey from the airport to our apartment to make sure it would be manageable (something to consider carefully before booking accommodation) and researched how accessible the transport would be. Thankfully, most of the public transport in Oslo was wheelchair friendly, so I didn't have to get out and walk too many times, thus managing to avoid the looks of awe on people's faces when they think they are witnessing a miracle.
3. My Travel Non-Negotiables
We all know how noisy airports can be, so this was an element of the trip I was dreading, as well as all the germs flying around in the air con on the plane. Think very carefully about what you will need to make your journey as comfortable as possible before you travel. I also sought advice from my Occupational Therapist at my M.E clinic who had some useful advice for me, so make sure to utilise all the help you have available to you and ask other people what has worked for them. In my hand luggage I packed the following:
Just knowing that I had my emergency stash on hand made me feel more comfortable throughout the trip, and I although I had a pretty big crash after coming home and subsequently spent a week in bed, I have yet to contract an air con induced cold, so good work Vicks.
4. Food, glorious food
I won’t go on too much about food because it is my greatest love in this life and I could wax lyrical about it all day, and also because I’ve had such a roller coaster journey in trying out different diets to help manage my symptoms that it deserves a whole blog post of its own. I have spoken to so many people with M.E online who are able to manage (albeit in small ways) some of their symptoms by following a very careful diet. I was also advised by my consultant that eating little and often, rather than eating three large meals a day was more suitable for people with M.E because our digestive systems don’t quite pull their weight, the lazy idiots. With all of this in mind I made sure to pack snacks and lots of them, and to seek out a shop on arrival so that I could buy my staples – gluten free bread, non dairy milk and plenty of fruit. We all know that one of the best parts of going on holiday is committing yourself to happily gaining about half a stone as you allow yourself some time off from eating sensibly. Alas, not this time. I’ve found that the slightest change to my diet can affect my symptoms in a big way; making me even more fatigued or causing terrible stomach cramps, so it’s important that you try to maintain your regular diet and try to avoid throwing your regimen out of the window. Thankfully I’ve never yet had a bad reaction to gin so hurrah for small mercies!
If all of that sounds really bloody boring and you want to just let your hair down for a few days then make sure you take your supplements, kids! My liver doesn’t function as well as it should so I take Milk Thistle to help flush it out (also helpful in enjoying the above-mentioned gin). I rarely eat meat so I take L-Carnitine to supplement my diet and I take vitamin B, Q10, L-Glutamine and loads of peppermint tea to give my digestive system a much needed kick up the arse. So if you want to go mad and eat a cheeseboard or have cocktail (I strongly believe that a little bit of indulgence does you good sometimes), then I suggest taking the relevant supplements along with you because it helps minimise the inevitable payback. If any of them are in powder form I recommend getting a letter from your doctor to take along with you to avoid any embarrassing run-ins with sniffer dogs.
5. Pace yo self
Those of you that have M.E or other, similar chronic illnesses know that one of the most important ways in managing your energy and symptoms is pacing. While this is undoubtedly helpful, it is also one of the hardest things to master. When I was first diagnosed I was told to always bear in mind that whatever I think or feel like I can do, I should cut it down by half and then half again. This is not so easy to do when you’re beholden to a travel schedule, so the best advice I can offer here is to just shut up, literally. I never realised how much energy is taken up by talking until I got sick! At several points throughout our stay in Oslo I put some calming music on my big old headphones and just shut myself off from what was going on around me. If you’re a worrier like me and are anxious about coming across as rude or antisocial, just explain your reasons for this and people will understand (and if they don’t then why the hell are you going on holiday with such insensitive gobshites?) Taking little breaks from joining in the conversation and cutting yourself off from too much sensory stimuli can really help you to save up little pockets of energy along the way.
Learning to live within your energy limits is so difficult because it means leaving before you’re ready or calling it a day when you’re having fun and just want to stay out for longer. This is crucial though to avoid crashing as the more crashes your body has the harder your recovery will be. Before flying I had my doubts about taking the wheelchair with us as I still struggle a little with feelings of guilt at people having to push me around or adapt their plans to suit me. I’m also not yet entirely comfortable using it out in busy spaces, I’m still getting used to it. My family wanted to do some sightseeing whilst there and I had resigned myself to not being able to join in, but thanks to their insistence that I bring the chair I managed to see some of the city, enjoy the sunshine and go out for lunch - something I haven’t been able to do in a very long time!
I still struggle to walk for more than about 15 minutes, anything exceeding that always brings on a big flare up of symptoms. Had I been on foot in Oslo I would have missed out on so much. I used to see my wheelchair as a concession or a mark of defeat, but now I’m learning to see it as a tool to help me pace my physical activity, so I can actually get out and enjoy life a little more.
Next step now is to accessorise it for different occasions. Any and all Halloween suggestions welcome, though preferably cat related. Obviously.
Thank you so much for taking the time to read my blog. If any other chronically ill cool dudes like myself are reading and want to add to my list of suggestions on how to make travelling more manageable, I’d love to hear from you. I’m still getting to grips with it all and always happy to listen and learn from other’s experiences. I also just want to clarify that many people with M.E would not even be able to contemplate going on holiday, especially not abroad. It is not at all possible for them and would make them severely ill. This advice only relates to people with ‘mild to moderate’ M.E like mine. A lot of it could be adapted to work for a short train or car journey, as I’m a firm believer that even a short and relatively close by change of scenery does the soul good (as long as it’s not going to make your illness worse) and that there are plenty of ways that travel can be managed to make it more bearable for people with chronic illnesses. I have written to Manchester Airport to make some suggestions about how they could make improve the service they offer for people in wheelchairs and people with nervous system disfunction. I’ll update you on what comes of it.
As ever, onwards and upwards!