M.E.

Join the Conversation on
M.E.
2K people
0 stories
213 posts
Explore Our Newsletters
What's New in M.E.
All
Stories
Posts
Videos
Latest
Trending
Post

My ME thoughts

Me/CFS is an illness where you are both living and dying at the same time. I use to think of it as trying to find balance between the crash and just living; and trying not to cross the line that separates the two. But that’s not it at all, it’s an illness where there is an invisible trip wire and one minute you’re living and the next you’re plunging off the cliff. It’s a descend that occurs sometimes very quickly and others slowly where you can almost see the energy leaving your body as you fall. Once it happens there’s no stopping it. And no routine can guarantee complete safety from its plummet. It’s the closest to living in a bubble I can imagine. #ME /CFS
#ChronicFatigueSyndrome

7 reactions 2 comments
Post
See full photo

Title: A Thoughtful Approach to New Year's Eve:

Introduction:

As the clock ticks away the final moments of the year, many people eagerly anticipate the arrival of New Year's Eve festivities. However, for individuals living with CRPS (Complex Regional Pain Syndrome), the excitement of the occasion may be accompanied by concerns about managing symptoms and ensuring a comfortable and enjoyable celebration. In this comprehensive guide, we will explore practical and thoughtful strategies that someone with CRPS can employ to prepare for New Year's Eve.

Understanding CRPS:

Before diving into the preparation tips, it's crucial to have a basic understanding of CRPS. Complex Regional Pain Syndrome is a chronic condition characterized by severe, often burning pain, inflammation, and changes in skin color and temperature, typically affecting a limb. The exact cause of CRPS is not fully understood, making its management complex and individualized, but as most of us living with the condition know, stress and the unknown play a huge part in causing a flare.

1. Consultation with Healthcare Professionals:

If you think it is appropriate, begin your preparations by consulting with your healthcare team. Schedule an appointment with your primary care physician, pain specialist, or physical therapist to discuss your plans for New Year's Eve. Share your concerns and seek advice on managing symptoms during the festivities.

2. Medication Management:

Ensure that your medications are up-to-date and well-stocked. Discuss any adjustments with your healthcare provider, such as changes in dosage or timing to accommodate the late-night celebrations. It's also advisable to carry a small supply of pain medications with you in case of unexpected flare-ups.

3. Comfortable Attire:

Choose clothing that is not only stylish but also comfortable. By opting for loose-fitting and soft fabrics that won't irritate your skin or exacerbate CRPS symptoms. Consider the temperature of the venue and dress accordingly to prevent discomfort due to temperature sensitivity.

4. Footwear Considerations:

If CRPS affects your lower limbs, carefully choose footwear that provides support and comfort. Avoid high heels or shoes that may put additional strain on your affected limb. Orthopedic shoes or supportive inserts may be beneficial in ensuring stability and reducing pain.

5. Plan:

Familiarize yourself with the venue and plan your movements accordingly. Identify seating areas, restrooms, and quiet spaces where you can take breaks if needed. Inform your friends or family about your condition, so they can offer support and understanding throughout the celebration.

5. Hydration and Nutrition:

Staying hydrated and maintaining proper nutrition are essential for managing CRPS symptoms. Bring a water bottle to the celebration and make mindful food choices. Avoid excessive consumption of alcohol, as it can interfere with medications and potentially worsen symptoms.

7. Pacing Yourself:

Pace yourself throughout the evening to avoid overexertion. Listen to your body and take breaks when necessary. Engage in activities that bring you joy but be mindful of the potential impact on your pain levels. Balancing participation and rest can be the key to enjoying a celebration without triggering a flare-up.

8. Temperature Regulation:

CRPS often involves temperature sensitivity, so be prepared for various weather conditions. Dress in layers to easily adjust to changes in temperature. If you're celebrating outdoors, bring a blanket or shawl to stay warm, or use a cooling device if the environment is too hot.

Mindful Stress Management:

New Year's Eve can be emotionally charged, and stress can exacerbate CRPS symptoms. Incorporate stress-reducing activities into your preparation, such as deep breathing exercises, meditation, or listening to calming music. Inform your close friends or family members about your needs and ask for their support in managing stressors.

10. Accessibility Considerations:

Confirm that the venue is accessible and inquire about accommodations if needed. Some venues may offer seating options, ramps, or other accessibility features that can enhance your overall experience. Advocate for your needs and communicate with event organizers if necessary.

Conclusion:

By taking a thoughtful and proactive approach, individuals with CRPS can navigate New Year's Eve celebrations with greater comfort and enjoyment. Consultation with healthcare professionals, strategic planning, and open communication with friends and family are key elements in ensuring a positive experience. Remember that every individual's experience with CRPS is unique, so tailor these suggestions to align with your specific needs and preferences. With careful preparation and a supportive network, you can welcome the new year with a sense of joy and fulfilment despite the challenges posed by CRPS.

Lastly, on behalf of Billy and I, here is a pain free New Years Eve and a pain free 2024!

#bnightscrps #CRPS #crpsawareness #CRPSWarrior #crpslife #crpssupport #ChronicPain #Chronicpainwarrior #chronicpainlife #chronicpainawareness #chronicpainmanagement #chronicpainquotes #chronicpainsupport #ChronicIllness #chronicallyill #chronicillnessmemes #chronicillnessawareness #chronicillnesssupport #chronicillnessquotes #ChronicIllnesses #burningnights #burningnightscrps #burningnightscharity #bnightscrpscharity #burningnightscharityfundraiser #k9searchmedicaldetection #barkbag #wagthedog #ME

Post

Sleep Schedule?

Hey fellow Mighties!

I am very curious, what kind of sleep schedule have you found helps you the most? I have been debating between a full 9 hours of sleep and a split sleep schedule of 4.0.0.5 and 4.5. The reason for this is I get exhausted after work, and if I push through, I still can't seem to fall asleep until very late at night even though I'm super tired.

What has worked best for you?

xoxo

#ChronicFatigueSyndrome #CFS #ME #Spoonie #ChronicPain #ChronicIllness

77 reactions 26 comments
Post

Feeling sorry for myself. #Depression #Anxiety #ChronicIlless #ChronicPain #Fibro #ME

Hi fólks! So here is the deal: About two weeks ago I had my annual flu shot and got a slight fever ( I sometimes do ), a week later I got my fourth Covid-19 shot. Two days later I got fever 37,5°C which for me equals 38°C because my normal tempture is 36,5°C. Yeasterday, Saturday, I had no tempture, but today, Sunday, it's UP AGAIN! 😡😣😣 I am feeling a bit frustred, had some plans, had to cancel for THE SECOND TIME THIS WEEK!!! ☹️☹️☹️ In my case this is a mixture of the shots, my reaction to them and the daman flu. Don't get me wrong, I'm not badly ill, just tired of staying home.

16 reactions 7 comments
Post

Competitive Sport

By no means am I blaming football for my mental health problems. I have fond memories of playing sport and being part of a team/organisation. I was gifted with the ball and excelled on the pitch.

It was my father who ruined my experience. It was not enough for my father to simply appreciate that his son was capable of running, jumping and kicking a ball. He brought along a competitive spirit that was not only embarrassing but toxic.

I was skillful but I was not a naturally gifted athlete with any attributes that made me excel far beyond my years. I was playing in the year above and starting in the team but again this was not enough for my father who expected me to excel in the squad. I lacked in stature and athletic ability (speed mostly) and this would eventually lead to difficulties towards the end of my playing days.

If I ever get around to having kids, I will think long and hard before enrolling them in to a competitive sport / environment. The problem with competitive sport is it breeds a mindset based on results. The schooling system is also guilty of this. I would like this post to focus on the issue of sports although I also experienced major issues at school.

There is an argument for competitive sport but my overall consensus is it did me more harm than good. The need to be the best always critiquing how I played, never being satisfied and the game forever playing on my mind. For something that gave me very little it is very taxing on the psyche.

My team disbanded and I was forced to join a new team in a more difficult league for which I was not prepared. The game was no longer fun and became serious business with everyone trying to make it to the senior squad where money was involved.

It was a combination of life getting in the way of my dream of becoming a footballer and my own poor life choices. It takes a very strong willed individual to ignore the lights, girls & music and focus solely on the game. You need to be wiling to sacrifice for the sport. When I gave up on football, I started to experience identity issues as I felt the game made me who I was.

My dad only wanted the best for me, so when I started to act out and started to steal it was a shock to him and he didn't know how to handle my behaviour.

It wasn't until I stopped playing football and realised that the game had left me feeling empty and took a lot away from me. It also left me with a competitive streak that I sought to satisfy elsewhere. I felt deep sadness that my own stupid decisions had ruined my dream of becoming a footballer.

In my later years I have trouble agreeing to be part of a team, group or association. Football is not the sole reason for this but adds to my mental problems associated with gang mentality. It also brings out an us against them mentality which I don't want anything to do with. Keeping to myself has brought on its own challenges and I fight with negative emotions most of the time as I come to terms with who I am.

#self #Myself #Individual #Fear #solely #Responsible #scared #groups #people #Smoking #Drugs #Addiction #Drinking #gangs #ME #Sport #cutthroat #toxicmasculinity #goingout #lights #Music #Addiction #Depression #isolated #nobody #bymyself #Girls #Identity #competition #NotGoodEnough #best #First #winning #Success #failure #defeat #bottom #Fights #Life #Death #alone

5 reactions 1 comment