You may have read my previous post – 5 Things I’ve Learned as a Partner of Someone with Chronic Illness, if not click the link and have a read!
If you have, you’ll know I wanted to add some more to my list. Chronic Illness is a big journey for everyone involved; there is so much to learn and remember, so many things to adapt to, so much to add to your life, and so many feelings to address. Hopefully you might relate to these, and if you have some other things to add please comment below, or feel free to email me – hearing what others are going through and what they have learned is always really helpful.
We all have a lot going on in our busy lives; maybe you have small children like me, or maybe you have a high pressured job, perhaps you are caring for family… life is hard work! And someone dealing with a chronic illness, and by proxy, their partner, will have even more to worry about; there’s probably daily medications, be they prescription or complementary; there are appointments to organise and to go to; there are blood tests, MRIs, repeat prescriptions to order; there are records to keep about exacerbations and relapses; there are naps and early nights, food and supplements to source and buy, and healthy meals to cook – and eat!
Being organised helps day to day living, relieves a lot of pressure, and can help you make time for important things and enjoy life. I have made this list into a separate post as it got pretty long and it’s useful in its own right. Click here to see some of things that I have found really helpful.
7. Have a Support Network – for BOTH of you!
Its no secret that everyone needs some kind of support system. And it is especially important for a person dealing with a chronic illness, and for their partner or family too.
However far or near you need good friends who listen and understand and offer advice and support. It is also really helpful to have people around you who can help with practical things; taking care of your children or pets, helping with transport, or offering food or help with housework.
For us we have both found it the most useful to have people to talk to; people that can we can both talk to together. Its been invaluable. However, as cheesy as it sounds, my biggest support comes from Nick, and I would hope that he would say the same about me – we can talk about anything and everything and always have each other’s best interest at heart.
8. Let Your Partner Be Independent
Embrace it. If they feel well enough and want to bring you coffee in bed in the morning, then for goodness sake let them, say thank you with a broad smile and a big kiss and enjoy that coffee with every taste bud you have!
It is easy to continue to do everything for someone you perceive as being poorly, if you care about them, its only natural; you don’t want to see them suffer or to tire themselves out… However, it can be damaging. Being able to do something, or not being able to do something, can have a huge psychological impact, good or bad. When your partner feels well and able, and they want to do something, however big or small, if you insist on doing it for them it is only going to stifle their self esteem and contribute to negative feelings… So don’t just let them, but encourage them, support them and definitely be grateful if it is something that helps you in any way. Their confidence and well-being will soar, the positive feelings will flow between you and your relationship and/or family life will reap the rewards.
9. Not Everything is About Their Illness
Sometimes it feels like it, but it’s really not. In our situation I suppose the children remind us of that all the time – their education, their social well being, their ongoing development, their basic care – its always there, and always important.
If Nick is having an off day – feeling a bit down or tired – it doesn’t necessarily mean its because of, or about MS; we all have tired days, all have mood-swings, all feel off… I really think that remembering it is a human thing – not an MS thing – is so important. You forgot something? Yes, it’s annoying – but it doesnt mean you are losing your memory cos of your MS – No, it means you’re 30, have a lot going on and your forgot something minor, just like I did, like 90% of 30 year olds probably did….
This is not to say that you do of course experience symptoms that ARE related to your illness, and they really suck. But you are still susceptible to the human condition too and even that isn’t always easy. Its OK to feel like crap, to be tired, to wake up late, go to bed early, have no motivation, not want to get out of your pyjamas, not want to talk to anyone, but please know that we all feel like that sometimes.
Also (and I am sorry if this sounds a little bit rant-y), when I take you away for the weekend; its because I want to spend a weekend away with you, not because it is part of your recovery… sometimes I just want a bit of normal couple stuff… we can still take it easy, and you can still nap, maybe I might nap with you for a change, but please don’t forget that I do things for you because I love you, not because you are ill. I’ll make you a cup of hot milk before you go to bed every night, just like you make me a cup of coffee every morning – you do it because you love me, and I do it because I love you. We are way more than your illness, and so are you. Please don’t forget that!
This is another point that could probably be a post on it’s own so I will try to keep it brief, but it is very important in our life, hence the name of our organisation. When we started this website and not-for-profit, our overall aim was to help people achieve their dreams and live the fullest life they can, by adapting; be that adapting themselves, equipment, their career, aspects of their house, their health care, their lifestyle, anything…! We hope one day we will be able to provide funding, support and facilitation to anyone who wants our help, but for right now, here are somethings you can do to help your own situation.
- Change your job or work for yourself – the 9-5 grind is hard enough on most people, let alone those suffering with an illness. So make a change, go part time if that’s possible (you may be able to claim for support from your government, for example, in England, it is possible to claim PIP, DLA, and ESA, as well as income support and other benefits; its always worth checking if you qualify – don’t feel ashamed; you are part of a society that offers it, and you deserve all the help you’re entitled to). Or find a way to work flexibly or for yourself; this is definitely not a simple process, and we will be writing much more about this issue, but look into your options, reduce your stress and enjoy the work you do.
- Find a way to exercise – there are many personal trainers and health professionals that can help you exercise. I am not one of them, so I won’t attempt to give you advice, but there are definitely people that will help you, even on websites and other blogs. Take a look around and see what you can find. Start with 5 minutes of something you enjoy, and see how you go.
- Do new things – This probably feels impossible at times, but there are tons of things you can do!
One example I can give you is Riding for the Disabled – they “provide therapy, achievement and enjoyment to people with disabilities all over the UK.” So ever felt like going horse riding or carriage driving? Look up your local group. If you want to get back into fitness or sport, check out the English Federation of Disability Sport – “working to make active lives possible with a vision that disabled people are active for life.”, there are local council initiatives too, so see what yours offers. How about dance? Here is one possibility – Wheelchair Dance Association. As I am writing and researching for this, I can see that there are so many organisations that provide opportunities in the arts, writing, sport, performance, travel, experiences, and lots more. I will definitely produce a more comprehensive resource! Whatever you want to try – see what’s available to help and just give it a try!
- Change your diet – Eating healthily will always improve anyone’s wellbeing. There are quite often recommended diets for different conditions, for example the Wahl’s Protocol method uses the Paleo diet to drastically help MS symptoms. There is plenty of info out there on general nutrition, and for specific conditions, and my general advice would be to research, meal plan, go for a predominately plant based diet, used anti-inflamotary herbs and spices such as Turmeric and Ginger, and enjoy every meal you eat!
- Accept your circumstances – this does not mean admitting defeat to whatever condition, illness or injury you might be fighting. It means accepting that this is your situation right now, and finding ways to make the most of it. Understand your limitations, but still push yourself to be the best of yourself, and to live life to the absolute fullest! It is hard work, and you may need some support, be it from a friend or from a health professional, and that is more than fine. Acceptance in any situation only ever leads to greater things!
There is pretty much always a solution to a problem; there is nearly invariably another way to do something. That’s simplifying, but its true. Life can be really tough, particularly with progressive and degenerative conditions, but in this day and age, with all the amazing technology, worldwide networking, and alternative lifestyles – there are endless possibilities to make changes and still live the life you want! I hope you found this post helpful; please share it with anyone you think might benefit from reading it, or pin it for later reading –
Check back for more posts and take a look around at all the awesome stuff that’s already here!
- Making the Most of the Good Days
- Someone to look up to…
- You and Me, With and Without MS (part 1)
- Staying Organised with a Chronic Illness
- My Journey with Lemtrada