It doesn’t get easier. You just get stronger.

Tuesday 01 June 2021

As well as ‘M.E. Awareness Month’, May was also ‘Mental Health Month’. Living with a chronic illness increases your chances of living with a mental health problem as it takes a toll on all aspects of your life in a myriad of different ways. From social adaptions, losing relationships, the feelings of guilt for not being able to do what you once did, grieving the life you thought you were going to have, to dealing with the overwhelming pain and symptoms each day. It is easy to build resentment and to feel a deep sadness for the future, especially on the days where things just seem hopeless.

In the UK today, there are 15 million people living with one or more long-term condition, which is around 30% of the population.
More than 4 million of those people that have long-term health conditions have a mental health condition.
37.6% of people living with severe symptoms of mental health problems also have long-term physical health conditions.

Sadly, these figures do not shock me. Especially since 2 out of 3 people in the UK who have a mental health problem still suffer in silence, so there are undoubtedly a lot more people out there who struggle to get through the day but don’t speak up because they don’t know who to turn to. They don’t feel heard or understood, especially those of us with chronic illnesses such as Myalgic Encephalomyelitis and Fibromyalgia.

The last fifteen months have been a true test for everyone’s mental health, courage and resilience. There are people who have never suffered from any mental health problems who all of a sudden, have developed severe anxiety, which has reduced them to having anxiety attacks and panic attacks that they’ve never experienced before. Everyone was getting a view into the world of chronic illness: staying home, not being able to go out, not being able to see friends or family, all because a serious illness they never asked for was stopping them. I was hopeful that after this pandemic people would be a little less judgemental, they would be kinder and a lot more willing to be open and tolerant to let people just live their lives, due to experiencing things that perhaps they had been quick to judge pre-Covid-19. Unfortunately, this doesn’t seem to have been the case and resilience and self-care is needed more than ever.

As members of the ‘Spoonie’ community, we are very aware of pacing and making sure we regulate the energy we have to what needs to be taken care of in our lives. We know that planning is vital to make sure our very limited ‘internal batteries’ don’t run empty. Of course, there is always the difficulty of not knowing how our day-to-day will actually play out as symptoms can arise at any moment. Like chronic illness, self-care isn’t a ‘one size fits all’ kind of thing – what works for one person won’t always work for the next – and symptoms may vary. With the constant unpredictability of our physical health and in light of mental health awareness, I want to talk about self-care and building resilience, because they are such important tools for our ‘mental health toolbox’ and for us ‘Spoonies’ our mental health is one of the only things that we may be able to have control over.

A lot of people don’t realise that self-care has multiple levels as well as different meanings to each individual person but more so, that self-care and resilience actually go hand in hand.

Let’s go back to basics.
Resilience is the ability to bounce back from difficulties, unforeseen circumstances and curveballs that our lives undoubtedly throw at us. It provides mental protection from emotional and mental issues.
Self-care is the foundation of health care. It is doing the things we need to do to maintain our happiness, our mental health and the ongoing development of the mind in whatever way works best for that particular person.
It is clear then, by these definitions, that if you find the right self-care routine for yourself that building resilience is also at the root as, like my granny always said, “You can’t pour from an empty cup”.

The first point that I feel needs to be known and understood about self-care is that it is not a temporary thing. Self-care is something that we must constantly work at and adapt to our current circumstances in order to move forward. Just like with our day-to-day living with chronic illness, if one day we have a plan but don’t have the possibility of our body doing that plan, we then must adapt.

Self-care is all about ‘self’:
Satisfying – Intentionally and personally.
Empowering – It gives you your power back and allows easier control of situations.
Lasting – It helps get you through your day, week and month.
Fulfilling – It gives you what you need in that moment and beyond.

When talking about self-care, a common misconception many people have is that self-care is all about personal care in regards to fitness, diet, skin care, hair care etc., but there can actually be up to eight different types of self-care. These eight are broken down as follows:

  1. Physical – Sleep, exercise, walking, stretching, yoga and nutrition.
  2. Emotional – Stress management, coping mechanisms, journaling, therapy, compassion.
  3. Social – Boundaries, support systems, positive social media, communication.
  4. Spiritual – Time alone, meditation, prayer, nature, sacred places.
  5. Personal – Hobbies, creativity, goals, identity, authenticity.
  6. Space – Safety, healthy environments, stability, clean space.
  7. Financial – Saving, budgeting, money management, paying bills, boundaries.
  8. Work – Time management, breaks, work boundaries.

The most common thing in all of these levels is boundaries. Making sure you have a good grasp of your own boundaries in different situations is a very important part of self-care and in building resilience. This is especially true for people with chronic illnesses: we sometimes feel a lot of pressure to cater to others.

When figuring out your boundaries, ask yourself, “What am I comfortable to give to this person/situation? And what will I hand back to them?” It is very much a case of saying “I am comfortable to do ‘this’; however, ‘this’ isn’t mine and belongs at your doorstep”. One thing I find about a lot of people is that they like to take more than what is being offered to them and many people forget to appreciate who they have. Making sure you have solid boundaries in place can help you build resilience, keep control of the situation and make sure that you are not becoming quickly depleted in the situation. Never feel guilty for setting your own unique boundaries and more so, never apologise for being assertive about them. As with the types of self-care, there are many different types of boundaries: emotional, physical, material, time, intellectual, sexual and spiritual.

For more information on how to set boundaries, finding out what your boundaries are and how to not feel guilty for asserting them, Supportiv have a great page to help.

As I said earlier in this post, self-care isn’t a ‘one size fits all’ thing. I, for example, need more ‘me’ time and I actively set out time every day, some days more than others, to focus on my self-care needs and making sure everything I need is being met. I not only face my own health issues and try to be the best mom I can be to my two boys, but my husband and elder son are also neurodiverse, which means I have to make sure I’m at my best in all aspects to allow for better patience and understanding for them and to communicate effectively. My husband’s downtime consists mainly of gaming when he has a chance, whether it be on his phone, computer or console. He enjoys 3D rendering on his PC also. One of the only activities we have in common is going for a drive. My husband is at his most relaxed and focused, and funnily enough, most open for discussions, behind the wheel of a car. He has a very stringent beard care routine but aside from the basics of showering, teethbrushing and hairbrushing, that is as much as he does for general self-care; this works for him though, and that is what is most important.

I have ‘Self-care Sunday’. Sunday morning is always family time in our home and Sunday afternoon is when I make sure that from top to toe I am pampered ready for the new week ahead. I make sure that my planner is up to date; I write a list of things I want to get done that week. Due to my osteoarthritis caused by a back injury, I have to make sure I do some sort of light weight training and stretching schedule, so I have to make sure it is planned. I make sure I have some sort of meals planned for the week to keep up with my nutrition as this helps me keep some of my symptoms in check and most of all, I check in with how I’m doing, and if anything needs changing in the next week. If I feel someone I have been having contact with is starting to drain me a little, I’ll take note of it and give myself some space the next week from that person. If I feel that I am a bit more depleted that week due to not having as much time to myself, I will make sure I plan for more time the next week for myself. Self-care is a long-term thing and you have to be willing to constantly adapt and adjust it for what you need in the moment for long-term effects.

It took a while for me to become comfortable with the level of self-care I need in comparison with my husband, but I continuously work on not feeling guilty about taking the time I need, as I need to make sure I’m being the best mother and wife for my family I can be. Don’t feel guilty if you require more self-care than others, if you have more boundaries than others, if you need to do less for a few days so you can give your best for certain days; that’s all perfectly acceptable and needed in our world of chronic illness.

For anyone who is struggling with mental health problems or if you are someone who is worried about a friend or relative’s mental health, there are so many charities which are able to give more information and make sure you get support. Some of these charities even have helplines if you need to talk to someone.

I would always encourage anyone to contact their GP and talk to them if they are worried about their own or someone else’s mental health. If you are in school, please do also turn to any educator or teaching assistant for help. Many more employers are trying to be more aware and provide help and acceptance when it comes to mental health problems, but there is still a way to go in that area. It is always worth being open and honest with your employer if you are struggling.

As someone who has battled her own mental health problems for many years and in many different ways, I want to extend a hand to anyone who is struggling with their mental health. Please don’t suffer in silence: I, Louise and the M.E. Support team will do all we can to help if you Contact us via the website or Facebook Page.

I know it’s hard when you are in the deepest, darkest corners of your mind and you think hiding away is the best thing to do, putting on your ‘brave face’ and being ready to answer with “I’m fine”. There are times when you feel exhausted and just don’t have the energy to have a conversation, even though you don’t want to feel alone; you miss people but don’t want to reach out to them because your head tells you five hundred reasons why you’re not worth doing so. Don’t listen to everything your head tells you. Depression and anxiety can tell you things that simply aren’t true. Dark days happen but that doesn’t mean that with the right help you can’t have the beautiful and bright life you deserve. Today might not be a good day, the next week may be tough but hold on, reach out and remember you are valid. Your feelings are valid. You are enough. You are a warrior, because there is nothing scarier than having to battle your body and mind and face your demons every single day. Please be kind to everyone you meet: you never know what people are going through and you never know the difference simply saying ‘thank you’ or ‘enjoy your day’ to anyone in a public-facing job, for example, could make.