I hope everyone is well and staying warm. I thought today I'd talk about energy if you don't mind? Energy, or rather the lack of it, has been at the fore of my thinking this week. I should explain.
First thing Monday morning I attended an appointment at our local hospital. The appointment was in the Occupational Therapy Department and had been organized for me by a very kind Doctor I'd seen on my last visit to the rheumatology clinic. The occupational therapist explained that I had been recommended to take part in a "fatigue clinic" which aims to help attendees cope with their work and home life.
The OT was a very sweet girl who seemed genuinely to want to help but as we spoke it became increasingly clear that I knew more about actually living with the overwhelming effect chronic fatigue can have and, more importantly, about several coping mechanisms which help mitigate this effect on day to day life than she did. More than 15 years of living experience versus book learning dear ones :/ Please understand that I don't intend any disrespect towards the lovely OT, she was very sweet and kind.
We chatted for over half an hour and bless her I truly do think she wanted to help but I felt like she didn't really understand when I tried to explain that simply attending her appointment, the travelling there and back again, would actually drain me for the rest of that day and, as it turned out most of Tuesday too.
I wasn't being flippant honeys when I said "more than 15 years of living experience versus book learning." The OT clearly meant well, she so obviously wanted to help but she was also, and I hate myself for saying this! She was so young! Learning about fatigue, especially chronic fatigue, from study is never going to be the equal of having experienced it.
Of course I'm not saying that something must be experienced in order to know everything there is to know about it. I've been given wonderfully helpful exercises by occupational therapists over the years to help fight muscle pain for instance. What I am saying is that being unable to understand the intricate planning that must take place before every single activity when coping with CFS means that she doesn't truly understand what sufferers face, what goes into finding the coping mechanisms we all hold so dear. This is not a failing on her part, she's trying to help and the longer she works in the field the more she'll learn through listening to others experiences.
I do try to share my coping mechanisms in the hope they might help others, I even have a tab at the top of this page where I've written about them, but the effect of Monday's appointment, how entirely it wiped out my energy reserves, such as they are, has made me almost certainly decide not to take part. I have to admit too that the idea of immersing myself in group "coping" sessions each week does actually repel me. That sounds harsh and I swear I don't mean it to.
I cope as well as I do because I am stubborn honeys. In my mind I have not accepted the limitations my health puts on me. I fight them and I don't do pity parties. Good grief that sounds harsh again! I'm sorry, I don't mean to imply that's what these group sessions would be, but I don't waste time complaining. Instead, if I find something I can't do as I used to I find a new way of doing it. My life, my day to day living is finely balanced. In order to be able to make it through my shifts at the weekend I have to rest today. It's not an ideal way to live but it works.
For what it's worth I thought I'd share what would be my contribution to the group sessions if I were to go honeys, in the hopes that it will help someone out there.
- Concentrate on what you are able to do and not on what you can't. Try when you can to do even a little bit more than you think you can. You'll feel good about achieving targets and it'll give your mood a boost too.
- Plan your day but be realistic. Don't cram too many activities into your daily plans because "I used to be able to...." Don't spend tomorrows spoons honeys, always keep one or two in reserve, just in case.
- Learn to delegate. Don't let stubbornness or pride make you demand all chores are yours alone (listening there Rosie?) As an example, I used to shop for whatever bits we needed grocery wise after my late shift on Saturday nights but for a while now Hubby bless him has been appearing on a Saturday morning with a notepad, asks me what we need and off he goes and does a grocery shop before I head off to work. This means I can come straight home after my shift. A small thing really but it's made such a difference! Thank you sweetheart x
- Prepare. Planning again but a short time spent ahead can make such a difference to how your day goes. I posted recently that spending an hour preparing smoothie bags for your freezer means that on not so good days when it might be difficult to cook anything you'll still have a healthy choice on hand that takes literally a minute in the blender. Bonus too is that it will help give your body a boost and help you feel better.
- Rest when you need to. Obvious right? Oddly enough not. It's so important to work with the natural rhythms of your own body. There is no point in making plans for very early mornings if you are most productive in the afternoons, or vice versa. I was always a night owl when I was at university so I'd study through the night but now I start to yawn around 8pm :) Do what you can when you can honeys and rest when you need to. Even a short nap can make a profound difference to how you cope for the rest of that day.
- Be kind. To yourself that is. Try to be as kind to yourself as you are to others honeys. Try to stop the critical voice in your head before it starts and it's ok to retreat from the world for a while when you need to, just make sure it's not too long, you'd be missed x
More to read: There is a wonderful page on CFS/ME, from the NHS website, which you can see here It's not just spoonies who can feel drained though honeys. Everyone has probably experienced a time in their lives when there was too much to do and not enough time in the day to get it all done. Even a short time of rushing around and trying to keep up with target meeting can lead to feeling exhausted. We all need to listen to what our bodies are saying to us and act accordingly. What do you do to relax when life gets too busy? How do you re-charge your batteries? I usually read or listen to music or both :)
I hope you're having a fabulous week honeys and that you're looking forward to a fun filled weekend, till next time dear ones, hugs always xx