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.
For the last couple of weeks we’ve started taking a look at some foods that may be helpful for fibromyalgia. If you missed the first two posts, you can find them here (Part 1) and here (Part 2). I’m highlighting some foods because of the specific nutrients they contain that may help with fibromyalgia, but these are definitely just some of the foods we may want to include in our diets (and whenever I reference diet, I’m just talking about what we eat, not a specific diet). A healthy diet should include a variety of foods. As I mentioned in For the Love of Food, we don’t yet understand how food works synergistically in our bodies to give us all the nutrition we need, and our best bet for getting those nutrients is to eat an array of real foods, foods closest…
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…
It has been a minute since I updated everyone on the MS front so here goes. I have been off all my medications for about a year. I will take the occasional pain pill, but I try to limit those because they are dangerous. I stopped taking my injections of Copaxone in May of 2016 simply because I was worn out from giving myself an injection 3 times per week for nearly 3 years.
Without the medications I simply have to tough it out. It isn’t easy, but I prefer the pain to all of the side effects of the pills. I’m not sure which is worse, MS or the medicines used to treatment MS.
My two primary symptoms that I deal with are fatigue and lightning flash pains. The fatigue I manage as best I can and have learned to rest a lot on the weekends. There are still times when I am asleep at night before 9. I joke with Evelina that I’m just getting older and eventually you’ll find me at the cafeteria at 4:45 pm eating dinner.
For my fellow MSers you understand the flash pains. They are the ultimate in shooting pains in my hips, legs, elbows and hands. They hurt pretty bad, but it’s nothing I can’t handle. Like I said, for now I’ll deal with them versus taking carbamazepine.
All-in-all I cannot complain too much. I am sure there is someone in this world who would gladly switch places with me. Isn’t life funny like that? We think we have struggles until we read the story of someone who is fighting an incredible battle.
I hope everyone takes time be thankful for the simple pleasures of being able to walk. It it so easy to take it for granted.
Here’s an exercise tip for those of you who struggle with chronic pain: when you go shopping, park a little farther from the store than usual and make yourself walk a few extra steps.
I make it a habit to do this every day!
The extra steps add up throughout the week to help burn calories and strengthen your legs. You must make your body move even if it hurts because the more you sit around doing nothing, the worse your pain will get.
One thing that I have realised after living with multiple sclerosis for almost 25 years is just how variable it is. I was initially diagnosed as having ‘relapsing remitting’MS (RRMS). I was never sure when the next relapse would arrive. At one point, I went a whole 8 years without a relapse, feeling great with no MS symptoms, then I had 3 relapses within 18 months. As time has gone on, my relapses have stopped but the progression of my disease has become significant.
Have I moved into‘secondary progressive’MS (SPMS)? My heart says yes; I seem to fit the criteria perfectly. But my health care team seem to be reluctant to provide me with this label, perhaps because there are fewer treatments for SPMS and they are keen for me to continue on a Disease Modifying Drug (DMD) to see if it can slow my progression. I…