My illness hasn’t gone, I can still feel it, but it has become so much more bearable.
I used to cling to the hours where I could almost believe I was well again, but it is so demoralising hanging all of your hopes and dreams on those few hours.
I’ve found I’m a lot more accepting of my current state, where there are more ‘good’ days than ‘bad’, although more accurately I am perpetually hovering around that middle line, I’m more resilient to the bad symptoms so I’m not crashing anymore *touch wood* but I’m also not reaching ‘healthy’ mark either.
My symptoms on a whole are mostly under control if I stay within my boundaries. Thankfully I’ve learned to listen to myself a lot more, so I know when I’m reaching my limit of too much, rather than constantly going over it.
I’m now at a point where I can:
- Do two 20 minutes cardio routines a week
- Do yoga…at least a sun salutation once a week!
- Walk Phoebe at least once but sometimes twice a day for 20 minutes.
- Focus and my mental clarity has greatly improved, to the point where I’m able to develop my skills
- Maintain an ‘active’ social life
- Writing a lot more than last year!
I thought, since I’m feeling so good about my Chronic Management Routine right now, I’ll share it and hopefully it helps some other spoonies out there.
5 ways I’ve found that help in managing ME/CFS
Follow Doctors Orders
As anyone with complicated health will know, you go through a lot of tests, especially at the beginning. With every few tests they do you’ll maybe have a deficiency in something, or an infection somewhere, but nothing that will explain the severity of your symptoms.
Despite the lack of scientific certainty of what exactly is going on overall, treating symptoms as individuals can help. In certain conditions you can take medication to fix the symptom, like nausea, or headaches, despite not knowing what is causing it exactly.
I’ve tried a long list of pain medication, experimentally using drugs meant for different conditions but sometimes works for people ‘like me’. Eventually, none of them worked.
No answers as such, but thanks to modern medicine, while I still have ME/CFS, I don’t have a painful reaction every time my skin gets cold, or have really bad stomach acid, or have out of control anxiety.
Every thing changed for me when I discovered cannabis. Life was suddenly liveable again. Over a matter of weeks I was back to sleeping soundly, throughout the night. Its been 18 months and now I don’t wake up once through the night.
Slowly I began getting more energy, my mood was more elevated, I was in less pain.
I could probably get rid of pain entirely if I used it throughout the whole day, but I can’t function like that. Oils are the next step for me to try, perhaps that will help the day time pains.
I started being able to go into our little town, sit in coffee shops, browse book shops, go to the cinema. I still had to take it slow, but I was improving. With this extra energy I was able to start graded exercise.
Moving Your Body
There is a lot of fear towards pushing yourself when you have a Chronic Illness, so scared that you’ll go back to those early months of the illness. Months where you can’t move your leg on the sofa without agony. Unable to get out of bed, unable to read, or think fully. Trapped.
But sometimes, pushing is what you need to keep on improving.
I started with just a short 5-10 minute walk with the boyfriend and Phoebe. I got tired quickly and my body hurt afterward. Some days, if I’d walked, I wouldn’t be able to stand for the rest of the day.
Persistently, the walks got a little longer, more frequent.
I started swimming. One length at a time. It’s a fine line to navigate, doing enough to benefit your body, but not so much that it creates a relapse. I was definitely not always successful in this. I spent many days on the couch, covered in deep heat, grumbling.
Now, after being diagnosed nearly three years ago, I’m doing long distance walks, 7 miles! That was huge for me. Took me a few days to recover, but it was worth it!
Now, this may be controversial, but legal. There are lots of medications currently not supplied by the NHS which have been used in other countries like America to good success and can be ordered online.
This depends so much on you as a person. If you’re like me and got fed up of waiting, you might want to try these out, but it is trial and error. The one I have been using works very well, some days I even have energy like I did before the illness. It came as a recommendation from a friend, then verified by another friend, along with extensive research done by my partner on the testing and chemical makeup of the medication.
I’ve deliberated long and hard about whether to include this medication in the list. Honestly, I’d be only giving a half truth if I posted this without including it. Yes, the first three steps got me to a point where I was living again, writing, seeing friends, walking, but the new medication really put me back on track to getting my life back together.
Don’t get me wrong, you still have to get a good nights sleep (which is where the cannabis helps) and if I try to use it to skip a needed rest day, it actually doesn’t end up working out. But as a supplement for the days when you feel okay, but are lacking in the energy to be able to do the things you need to, it’s amazing.
I decided though, that if you’d like to know more about what I use, like it’s name, then please message me. I’d rather that than someone read my endorsement, take it, and have problems.
Yup. No escaping this one. It’s just going to take time. Learning to accept that, and allowing yourself to take that time, is a huge step. New medications might help speed this up somewhat, but there is no escaping the time your body needs to recover from what ails it.
There are no averages, not really, everyone is different. Pretty much everyone with ME/CFS has slightly different symptoms, or some more prominent than others.
I’ve spent most of the last three years waiting, Waiting to be better again.
I don’t feel like I’m waiting anymore, I’m working towards getting better.
Of course, there are aspects beyond my control; without knowing the exact cause and nature of the condition it’s hard to say if it is something that will ever be gone entirely.
Spend time adjusting your perspective and you’ll find you can’t go back to a time before the illness, no matter what happens in medicine, we’ve been changed by living with the condition.
I’m now looking forward rather than back.
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