Thursday, 22 October 2015

How To Cope With Chronic Fatigue

Hi Honeys
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. 
How to cope with chronic fatigue

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.
  1. 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.  
  2. 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.
  3. 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 
  4. 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.
  5. 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.
  6. 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

8 comments:

  1. Rosie! I absolutely loved your post. Since the school I work at doesn't let me on facebook or twitter (hahah like I'm a child) I shared it on pinterest in my "self-care" board which I think fits very well there. I so resonate with listening to our bodies and being kind to ourselves. It's so hard to do sometimes. Sometimes my inner critic becomes very demanding and loud and I have to gently remind her to take a deep breath and lower her voice ;) Whiile I don't struggle with arthritis like you I feel like I can relate to what you are saying. For about 10 years I ran competitively and then something just gave out and I developed chronic plantar fascitis in my feet to the point where I could barely walk. It lasted for years and it was horrible! It was so hard to delegate and accept what I couldn't do anymore. I also have struggled with migraines and headaches since I was in 6th grade. I totally get what you mean about doctors and health professionals. Some are so very kind and want to help but I have often felt I am way ahead of them in coping skills just because I've dealt with my body pain much longer. I always remind myself "I am the expert on me!" And I try to remember this as a therapist with my clients. I remind them that they are ultimately the expert on themselves. I can give tools but they know themselves so much better than I do. Like you said, book smart can only go so far. Listening to my body has made all the difference for me. I fought it for so long saying "I used to be able to run 3 miles easy!!" but now I'm happy that I can walk around the neighborhood and ride my bike and do yoga. I try not to compare myself to others. Even though it's hard. Okay, this got long! But I really appreciated this post. Chronic pain is so hard and often something I've felt shame about and worried I'll be perceived as weak. Your post was very kind, normalizing and comforting and cozy as you always are!!! oxoxo

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    1. Hi Heather :) Thank you so much for your lovely comment, seeing your name so made me smile this morning :) I'm so sorry you had to cope with plantar fasciitis, it really is horrible. I suffered from it for a long time too in my right foot. It's hellish painful and takes away one of our most valuable possessions, our mobility. You used to run in competition? That's awesome! It must also be a horrible thing to have taken away from you angel. I constantly long for the days when I used to run everywhere. Friends lived around 3 miles away and I would never have dreamed of getting a bus, that's what legs were for :) I so wish I'd appreciated my mobility more while I had it :/ I wrote a post a while ago on how to be a survivor not a victim of a chronic illness and it really does all come down to attitude I think. A determination not to let it win. To accept the change in mobility, because we have no choice in it, but to then live the very best life we can in spite of it. My current walking stick is an electric blue to remind me of that :)

      Migraines are the worst :/ They're sickening, debilitating, torturous things. I'm so sorry you've had to deal with them Heather. I still have them occasionally and a migraine is one of the few pains that can still absolutely stop me in my tracks. Our Doctor's surgery has two lovely doctors, one of whom has also suffered from migraines and this was such a blessing when I was chatting to her about them once because she understood. She knew from experience that to call them a headache was like calling a hurricane a wee breeze, bless her. It so helped to talk to someone who understood.

      I've always thought the best doctor listens more than they speak because we know our own bodies, we know when a pain gets worse or when we feel different. You're so, so right too about feeling shame at not having the same abilities or mobility as in the past. My biggest fear at work is that they see me struggle with tasks while I'm there. I've become very adept at hiding when I'm tired or in pain because I simply can't allow my employers to see it. They'd think I couldn't do my job and maybe decide I'm not worth keeping. I need my job honey, not only because it helps us to pay the bills but also because it's the only time I go out of the house, other than medical appointments. I need to keep that connection with the outside world. It would be all too easy for me to never go outside again. I've fought that battle before and I know I'm not strong enough to do it again.

      Your clients are so lucky to be able to work with you Heather because you're such a sweet, caring, lovely person. You have such insight, an intuitive understanding and coupled with being such a genuinely caring person, that makes you so perfect for the work you do. I hope that your clients appreciate how lucky they are. Sending you heaps and heaps of hugs angel xxx

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    2. Rosie! Thank you for your kind words!!! I feel so warm in my heart. You are so generous with you sincere words and I hope you don't doubt the positive power and influence of your words.
      What do you do for work? I can totally relate to that. I wanted to hide that my feet hurt so much and would just become really quiet. Fairs and amusement parks? A terrible nightmare for my poor feet. I just stopped going. And I totally get what you mean! I remember when I went to Hawaii I had to get a little electric scooter I sat on that wheeled me around when my feet were at it's worse. People laughed at me like it was a joke because I "looked" young and healthy but they had no idea how much pain my feet were in. I agree with you too, you have to stay open and flexible and roll with the change. If you stay stubborn about what you "used to do" it will only harm your body more.
      Also found you on pinterest so that's been fun. A good break from unpacking and boxes :) oxoxo

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    3. Heather, what a sweet, wonderful thing to say! Thank you! I'm so sorry you had your holiday ruined by insensitive, judgemental people. If people only knew how hurtful their words, even their stares could be, maybe they wouldn't be so quick to judge. When an illness or injury is invisible, the world can be too quick to be negative and it's so much worse when a person appears otherwise to be fit and healthy. They have no idea how hard that person might be fighting to hide pain behind a smile.

      I really don't believe people mean to be hurtful, I just think they don't understand, that's all. I'm so, so happy you're unpacking and getting settled. I was really worried about your having to live with all of that dampness and mould around. It's so dangerous :/ Wishing you all good things in your new home angel and sending mountains of hugs xx

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    4. Thanks for all the hugs and kindness Rosie :) Finally almost fully unpacked. Just a couple more boxes in the guest room and then a big sigh of relief will come!

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    5. Yaaay!! Almost unpacked and settled in your lovely new home! I'm so glad! Now all you have to do is to fill your new home with smiles, laughter and great memories. Wishing you so many good things dear wee friend, huggles xxx

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  2. Great post! Being realistic is one I struggle with a lot, it's so hard to think about tomorrow when I feel good today and want to do everything. then I pay tomorrow. I still haven't learned this one very well.
    Hugs to you for writing this Rosie!

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    1. Hi Heidi :) You're so right! It's so difficult to stop myself from overdoing activities on the rare days when I actually feel almost like the "old me" even though I know somewhere in the back of my mind I'll pay for it next day. It has to be the most difficult thing in living with any chronic illness, this change of attitude. A realization that we are not who we used to be. The pain we all put up with and even find ways to cope with because there's simply no choice, but finding the strength to let go of the memory of our healthier, energy to spare selves, well it's just too painful to ever say goodbye to our other self because it's frightening. A step into the unknown. No one wants to ever be vulnerable, especially in a sometimes too uncaring world. That's where our supportive network of family & friends, including our wonderful online friends, is so incredibly important.

      Our new self is every bit as valuable as that other person we once were. We are survivors Heidi, we fight a daily battle with pain, with fatigue, with any number of annoyances. We have to hop through lots of invisible (to others) hoops in order to live our lives and we are all the stronger for it. I wear my (invisible) spoonie badge with such pride angel, we all should, we are cool people. We have an understanding of the world around us we didn't have before. We care about others because we know how it feels to be excluded, to be misunderstood. Wishing you a wonderful weekend Heidi and hoping you have more spoons than you'll ever need, hugs always xxx

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