It’s only Wednesday, and I have had a pretty eventful week so far. Many of you may know that I am currently off on long term sick leave from work and have been since May; I was struggling so much in regards to fatigue and mobility in work that I suddenly just felt that couldn’t do it any more. It is so hard: I love my job and the people that I work with. I love the kids and the feeling of satisfaction that I get from helping them. But the reality of living with MS means that sometimes I just need to put myself and my needs first. It is a difficult balance, as so much of my mental health, sense of self and self-esteem is tied up in my professional role. Luckily, my employers have been fab, and have always been willing to support the ‘reasonable adjustments’ that…
Fibromyalgia is a funny thing. Funny strange, not funny ha ha. One day you’re feeling well, you’re feeling optimistic that you might actually recover from it, and the next day, you’re in bed, feeling as if you’ve been hit by a truck.
I realized not too long ago that I was starting to feel hopeless. I just started feeling that I might never feel like a “real person” again. I knew two things: 1. I couldn’t live the rest of my life feeling so hopeless and 2. I had to figure out some way to live, and live well within my new parameters. As I thought about the most important thing the fibro has taken away from me, my hope, I started thinking about the best way for me to reclaim it. Part of it, of course, is doing things that help me physically, but I also needed to address…
Welcome! Thanks for visiting my blog! Wherever you are on your journey, I hope you’ll find something that will help you take the next step toward living well.
When I was first diagnosed with fibromyalgia five years ago, I honestly thought I could fix it. I’m a “do something” type of person. When something unexpected happens, my first thought is always, “How do I fix this?”. I got busy reading everything I could get my hands on and doing whatever I could to try to get better.
As the years wore on and I still wasn’t cured, I began to lose hope. It seemed like I’d be making progress and feeling better, and the next thing I knew, I was spending the day in bed, exhausted and hurting all over. I feared I would never have a “normal” life again. I realized that I had to take a more realistic view of my fibromyalgia and establish a new normal. I had to stop living in the past and how “I used to be” and learn to live well today. It was time to reclaim my hope! Yes, it’s true I may never be able to do some things I once did, but there are still plenty of things I CAN do, and one of those things is to learn to live well wherever I am in this journey.
Robin Roberts, a cancer survivor and anchor of Good Morning America often says, “Make your mess your message” and I’m hoping by sharing this experiment of mine, I can help someone else navigate this labyrinth of good days and bad days,symptoms and setbacks, and everything in between. I know for me personally, the things that are most helpful are those that point me toward actions I can take.
I’m a firm believer that God uses everything in our lives – He doesn’t let us suffer for no reason – and I pray He’ll use this to help others who are also on this journey to reclaim THEIR hope and move toward a more fulfilling life.
You can find the Reclaiming Hope logo in my sidebar and on the Partners’ Page at the top of my website! When you visit be sure to tell her Danny sent ya!
My children have only ever known me as their Mum with Multiple Sclerosis (MS). I was diagnosed 14 years before my first child was born and, although I was physically very well for the first few years of my children’s lives, they claim they can’t remember me not having MS symptoms. I have always been the limping Mum who uses crutches and a scooter, the exhausted Mum who benefits from a daily sleep and the Mum who has to adapt her daily activities to accommodate her chronic illness.
MS is a huge part of our life as a family and, perhaps because of this, I see it as my role to support and educate my children in understanding what MS is. I also hope to reassure them through my actions that, although the disease can be awful to live with, we can learn so much from it as well.
The word “grit” is a pretty versatile one. It can describe small particles of dirt or sand, courage or resolve, or the action of gritting one’s teeth.
All three of these meanings can apply in the world of chronic illness. Not sure you follow? In the words of Mark Ronson and Bruno Mars, “Don’t Believe me, just watch!”
Particles of Dirt or Sand
I think we all know the story of the Princess and the Pea. A very spoiled little girl keeps saying she can feel a pea under her mattress. No matter how many mattresses the pile on she still feels it.
While that is a fairytale, the feeling of something hurting your skin can be very real for those suffering from fibromyalgia. I find that a bit of sheet bunched up underneath me at night or too heavy/tight clothes can really cause pain during a flare. A tag…
This is my last blog post in the ‘This is My MS’ series (see here for my post about my physical symptoms and here for my post about my mental health). I know that I am very nosy eager to hear about how others try to manage their MS and the symptoms they have, so I thought that I would let you know about the steps I take to try and and live as healthily as I can, despite my diagnosis of Multiple Sclerosis. A bit about me first:
I am in my late 30s
I was diagnosed with MS when I was 15 years old (first symptom aged 13)
I am married with two kids, aged 9 and 7
I work 3 days a week (though my symptoms are making this level of work progressively more difficult)
I have always been interested in health and well-being and before my…
So, it’s finally happened. I have been waiting for it to happen ever since I noticed that my dodgy legs were getting in the way of me taking the kids to school.
Some background: for the first couple of years that Alex was at school, I was able to to rush out the door with only 10 minutes to spare until the school bell rang – and I would usually still manage to get him there on time (usually with Ava in tow). The school run was often left to me as Hubs wasn’t self-employed at that time, meaning that he was usually out of the house. Plus, I would be taking Ava to her toddler activities in the afternoon, which meant we had a good little routine going of toddler group – running errands – school run.
A couple of years ago, when Ava started school, I noticed that…
I continue to be off work for the time being, awaiting my Access to Workreport regarding adaptations and aids that may support me to remain in work. All this time off has done the world of good for my MS, I have to say. Unfortunately, I can’t say that my symptoms have magically disappeared, but Ihavefound them a lot easier to manage, as I have had the time to rest, sleep and stretch as much as my body needs to. Whether it is because I have had more time on my hands to think, or because they have been changing, I am unsure, but I have been much more aware of my symptoms over recent months.
I have writtenbeforeabout how my MS affects me, both physically and psychologically. Over the past year, since taking up blogging, I have had the opportunity to make new ‘MS…
I never have a Christmas wish list. There’s not really anything I want. I already have everything. All of the meaningful things in life. Two beautiful kids, a loving man, and the best sister. Parents that love me, friends, and a roof over my head. That’s all I need.
Gifts have never been on my priority list. Material things are just things. So when asked what I want for Christmas I usually say nothing or I don’t know. What could I possibly want?
A new leg, a new eye, not to walk like a drunk. Just kidding!
A couple nights ago and like most nights I was unable to sleep. Thanks again MS…lol. I don’t want to keep anyone up with lights or the TV so just like every other night I have nothing better to do but entertain myself with thought. A traffic jam in my brain. Yes I…
I know a lot of my readers suffer from chronic pain and I try to be an example of how to fight back. Today I went for a quick walk. I didn’t want to and my body yelled at me every step of the way, but I know I have to do it. I look at exercise like this…if I don’t force my body to move, then MS wins. I know a lot of you don’t exercise because you have told me so. You have said it hurts too bad. You have said you are too tired. I get it.
I almost had to call Evelina to come and get me, but I didn’t. I willed myself to finish what I started because in the long run it will benefit me more than sitting around doing nothing. Do you think I want to? No, I would rather sit and do nothing.
To those who tell me they cannot I would challenge you to begin thinking about what you can do instead of what you cannot do. If you can only walk to the end of the driveway then do so. If you can do arm lifts from your chair, then do so. If you can swim in the pool, then do so. Do what you can do, but don’t settle for doing nothing.
And it begins by putting one foot in front of the other.