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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

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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

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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

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Missing My Active Days

Seriously missing being super sporty and active. All through childhood, teens and even early 20s I was always the sporty one of my friends. Every day or evening of the week was spent either at the gym, running or doing gymnastics, trampolining, tennis, boxing, netball, hockey or horse riding. Usually more than one session a day.

I was initially diagnosed with Endometriosis and Adenomyosis at 15 but it didn't really stop me, there was a few days in a month where I particularly struggled. I've had a few back problems diagnosed over the years as well but then it was Fibromyalgia, M.E and Hypermobility (querying EDS) at 17 but I still managed to push through it most of the time - they say it's not usually degenerative although it can be but seriously through my 20s up till now (30), it has definitely got so much worse - mainly the Fibro, M.E and mental health - to the point where I'm no longer part of any sports team or club and often find it difficult just walking around the bungalow. I'm told strength based exercises can be beneficial for Hypermobility but not for Fibro and then stretching can be good for Fibro but not Hypermobility lol Rargh!

Usually I'm pretty accepting of it and know that I'm doing the best I can but sometimes (like now) I go through periods where I really do miss my old life and the old me.

I'm sure a lot of you can relate to that feeling.

I'm mainly writing this for a bit of a moan and letting off steam to be honest but if anyone does read this and can relate - what do you do to help when you're feeling pretty pants about it all? And is there anything you've found that can help you maintain or increase activity levels?

Any ideas welcome :)

#ChronicIllness #ChronicPain #ChronicFatigue #Fibromyalgia #MyalgicEncephalomyelitis #ME #jointhypermobilitysydrome

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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.

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