Coping Strategies for Living with a Debilitating Illness

I'd like to share a short story that I'm sure many can relate to, and which I'm hoping will bring some understanding to those who can’t.

 

The Deep Dark Shaft

She was in a dazed confused state of mind, not sure where she was or how she got there, or even how long she'd been there. It was pitch black darkness all around her; she couldn't see her hands in front of her: she felt panicked, squeezed tight by the cold hard walls pressing tight up again her whole body. She could hardly move. 

Up above her, her loved ones called down to her in desperation, but she couldn't hear them. She was still dazed and confused and didn't understand what was happening to her – that she had fallen into a deep dark shaft, barely wide enough for one person to fit.

Her loved ones threw down a rope for her to grab onto, however in her dazed state she didn't feel it and, in the darkness, couldn't see it.

Finally professional help arrived. The first thing they did was assess the situation: how long she had been in the shaft, the condition of the shaft and what possibly could destabilize the shaft during the rescue. They carefully lowered some food and water to her to give her the clarity and strength she would need to get out of the shaft.

When the food and water arrived, she slowly started eating. It took a little while, but gradually the fogginess lifted, and her eyes started adjusting to the dark and she started realizing just how bad her situation was. If she listened carefully, she could hear the words of encouragement being called down to her from above, from professionals and loved ones.

The professionals had advised her loved ones that this was going to be a long rescue as she needed to build up strength to pull herself out since the shaft was too narrow and unstable to use any heavy equipment.

Of course, onlookers, not fully understanding the situation, were shouting out all sorts of suggestions for the professionals to try: why not reinforce the shaft or use a winch, not realizing that there was no space to reinforce the shaft AND leave space to get her out, or to potentially collapse the entire shaft on top of her.

Time progressed and as she had more food and was able to start communicating with the professional team above, she was able to start the long hard process of extraction from the shaft. It was tough going for her. Sometimes she could only manage pulling herself a short way, or for a short period, and sometimes she even slipped back down a bit. The professionals and her loved ones kept encouraging her, and she started believing in herself and that she could get out.

With the love, encouragement and support from her loved ones, and help and encouragement from professionals, she did it! Through the huge amount of emotionally, physically and mentally demanding challenge of self-awareness and self-belief she got herself out of the clinging darkness in that deep shaft of nothingness called depression.

Analogy

This analogy is an example of what most people suffering from depression go through. Self-awareness, and the acknowledgment of having this awful mental illness that can be so debilitating, are just the beginning of their journey to full recovery. The journey is long and hard and not everyone has loved ones standing by, encouraging them. Sometimes, their loved ones are also those onlookers who don’t understand and make suggestions from their own point of view.

Every person's "shaft of depression" is different; therefore, it stands to reason that everyone's needs for recovery and how they pull themselves out will require some differences along the way. There is no "one size fits all"; what I share is through my own experiences and has helped me, so I hope you can find something in what I share that can help you too. Remember I also have my good and bad days, and I'm still on my own personal journey to full recovery, so I just do what it takes ...

In this article I will share how I try to manage living as normal a life as possible with two debilitating conditions: severe depressive disorder and, more recently diagnosed, fibromyalgia.

Professional Help

The first step is to get professional help and onto a proper treatment plan. If, as in the analogy above, the sufferer is so unaware of being in depression, let's hope a loved one notices that they have "fallen into the shaft" and gets them the professional help they so desperately need. In my case, my loved ones were so concerned about me when I had my 'breakdown' that they took me to the doctor who then hospitalized me and also sent me to the psychiatrist who diagnosed me and is still treating me for sever depressive disorder. The more recent diagnosis of fibromyalgia arose from being rushed through to the emergency room by my husband followed by hospitalisation and various tests being done. If you would like to know more read my full story.

Knowing your limits

This is probably the hardest but most important of all: knowing how much you can or can't do or take at a time. I still battle with this, as I used to be the master of multi-tasking and had such high standards while working at a fast pace in the corporate world – but then that is probably why I am in this situation, so I have to realise the new limitations of not just my mind, but my body as well. If I work my mind too much, I suffer with body pains, and if I work my body too much I suffer from exhaustion. If I am over-stimulated, I just suffer. I have to pace myself carefully and most importantly, not be hard on myself not being able to do what I could before. While writing this article, I was recovering from the terrible bug that had been going around and I had a hard time accepting that I had been even worse than I was before, getting exhausted just moving from the bed to make a cup of tea and then to the lounge to sit down with it. Then, having recovered from the bug I tried attending a local farmer's market with the craft items I've been making during my recovery. This didn't go so well as I needed a week to recover and being in such pain for the three days immediately after the market. So even my accepted reset abilities had to be reset and accepted again. As your journey progresses, you will constantly have to assess, reassess, reset and accept new limitations, mostly improved but sometimes accepting setbacks and working forward again to attain those lost abilities. My advice, though, is to stay positive, always. After all, you are worth it to do this for yourself.

Routine

Routine is driven a lot by your current abilities and where you are heading. While in recovery it doesn't help to be just sitting or lying around aimlessly without purpose as this can set you back. Having routine gives you purpose and allows you to measure your progress against your limitations. During the course I did with the occupational therapist, I would plan my day for every hour between 7am and 9pm, with the plan written down in my diary, usually the day before. I would then record what I actually did during the day against the plan. It doesn't matter if you don't stick to the plan as that helps you plan the next day, but it helps you to better understand your abilities and limitations. For example, washing dishes and hanging washing require you to stand a lot, whereas preparing vegetables can be done sitting at a table. It can then become a give-and-take situation. So, at one stage, I could hang washing and do dishes, but then not cook supper as well. It also goes a long way to helping your loved ones to understand what you can cope with: it was only once my husband saw this process working that he could fully understand what I meant when I said I couldn't cook supper if I'd already been busy in the day. I now include a daily record of my pain levels at waking and bedtime as well as how much sleep I get so I can see what tasks give me the most pain afterwards, and to make sure I'm getting enough rest overall.

Meditation

Meditation is spiritual and puts you in touch with your inner being, finding peace within yourself. I schedule a period of meditation into my day, just for 5 minutes. There are loads of meditations on Pinterest that you can download and listen to, or you could do your own. I like to do my own meditation to calm myself and my mind and also to remind myself what I'm grateful for, and then to clear my mind before I go to sleep every night. Sometimes it works, sometimes not and my mind still wanders off on all sorts of ideas and thoughts and I may have to give it a second attempt at trying to clear my mind. It's a work in progress.

Sleep

Sleep is incredibly important for your healing as your body and mind need rest to heal. The more you overwork your body and mind as I've described above, the more sleep you will need. There is no harm in scheduling an afternoon nap into your daily routine if you need it to get through the day. Do try to get to bed at the same time every night, as this is part of your routine. I record my hours of night-time sleep in my diary as well. Currently I need at least 10 to 12 hours of night-time sleep.

Exercise

This is up to you how much or little you can do but schedule it into your day. Even if it's just a walk around the garden, it's getting your muscles moving and blood pumping through your body.

The most I've managed is 5 minutes of various exercises I've found on Pinterest which I used to rotate through the week. But since being diagnosed with fibromyalgia, my body is just too sore, so I take a walk around the garden, with my kittycat Tom in tow!

Pain management

This is a tough one as each person has different symptoms and flare-ups as well as pain thresholds. My personal philosophy on pain medication is that I only take it when I can't bear it anymore and the pain starts altering my mood. I am lucky that I do have a very high pain threshold so I don't have to rely heavily on medication for relief, and I think what really helps me is also knowing that the pain is just my brain reminding me that it's hurting, and trying to heal, and I must take it easy. From the fibromyalgia side of it, I know the pains in my chest (which before being diagnosed felt like I was having a heart attack) are not really a heart attack, so I remain calm and don't allow the pain to take control of me.

My advice here is to discuss your pain levels with a medical practitioner and don't self-medicate indiscriminately.

Avoid negativity

Negativity could be coming from a place or a specific person, either way you need to take steps to avoid it.

If it's the workplace, you could consider changing jobs to a different department or even company if necessary.

If it's one or a group of friends, it's time you reconsider the meaning of what it is to be a friend.

If it's family, it's a bit harder. Particularly if that person doesn't think they are being the Negative Nancy or Norman. You will no doubt have at least one family member being that "onlooker" giving you all sorts of unsolicited advice. I generally take all advice on a "use or lose" basis, as there may just be a golden nugget in there somewhere, but never feel pressured to try everything you’re told, particularly if it doesn't feel right for you.

The only other advice I can give is to limit the amount of contact you have with your Negative Nancy or Norman and try not to be left alone with them either, as that will at least provide you with the buffer of having another loved one around as support to dilute the negativity. And if you really can't manage, just excuse yourself and go anywhere else, be it to the bathroom, or to go for a lie-down: whatever you need to do for your own sanity. I have even resorted to blocking them on my phone for a while, until I felt I could manage again. I do what it takes.

Support

Living with any debilitating condition is a challenge, as much for the person with the condition as it is for those supporting them. I so admire my husband for selflessly taking on the challenge when he married me, knowing what he was getting himself into, looking after me every day when I'm unable to look after myself. Take a moment to thank the people looking after you, picking up where you left off, being there to encourage you when you are down and having a bad day; and try to be there for them when they have a bad day.

 If you feel so alone out there and don't know who to call out to, please remember you are not alone, and there are professional people who can give you the support and guidance you need. I am available to offer a shoulder to listen however I can only offer advice based on my own experience, Lifeline South Africa offer professional and confidential advice and can be contacted as follows:

Email: info@lifeline.org.za

Website: https://lifelinesa.co.za

National Counselling Line: 0861-322-322

Personal Journey

Your recovery while living with a debilitating condition is a personal journey which will be challenging but it will also be one of personal growth as you learn more about your own limitations and how to adapt to them. Acceptance is step one, a big step to take, a hard one, and it doesn't get easier. Some days will be good, some bad, just do what it takes, and you won't regret it. After all, you are worth it.

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