Category Archives for "Spoonie Life"
posts about life with a chronic illness
posts about life with a chronic illness
Natural Health Worldwide (NHW) is a new website that launched on 1 June, this year. It is a portal which connects patients from all round the World with NHW health practitioners. These practitioners, also from all round the World, can be Medical Doctors, other qualified Health Professionals or Experienced Patients.
Each practitioner has an individual webpage where they can describe their qualifications, their experience and what they specialise in. Patients can search the site by type of practitioner and or illness/problem.
Appointments are booked through the website and can be conducted by Skype, Facetime, ‘phone or email. This makes the process very convenient and also caters to a forgotten patient population – the housebound and bedridden.
I’ve had quite a few people ask what I’m using for pain management. One of my favourite things since falling ill is MSM. It is my one staple since I first heard about it and it’s potential to help the body heal from all sorts of things.
It is sometimes referred to as the “miracle supplement” and also the “beauty mineral” because it is so beneficial in so many areas. One of the reasons for this is that MSM makes our cell walls more permeable, meaning that toxins can be more easily removed and nutrients can more easily be absorbed.
It’s almost noon and I’m still in bed. I just Sat up actually when my sis brought me a nice big mug of decaf with coconut oil and quercetin in. Part of my morning routine now, though I’m starting to wonder whether coffee is one of my histamine triggers, despite being decaf. I might stick to golden tumeric milk instead.
I had been doing so well for so long that I had almost forgotten how bad these flares can get. It can be discouraging when you are reminded so unexpectedly of the horrible passenger you carry with you always.
This ME/CFS might be managed or worked around for a time, but it does come back to show itself from time to time, makes sure you remember it’s still there and just how strong it is.
I have spent so much time on the sofa and in my bed again this week. One would think I’d no longer be surprised by this, but I continue to shake my head every time it happens.
It’s the carbohydrate effect.
This current flare is most likely due to the fact that I’m out of ketosis again since trying to deal with my allergies/histamine disorder. I assume I’m no longer fat adapted because, amongst other things, my munchies have returned with a vengeance!
You see, I’ve increased certain carbs (mainly apples and sweet potatoes) which help reduce histamine building up in the body, but by trying to solve one problem (itching, hives) I’m causing another (ME/CFS flare).
It’s a vicious circle, but one has to decide what the priority is and work with that. For me it was the itching. I just couldn’t take it anymore!
Sometimes you don’t notice the weight you’re carrying until you let it go.
This is often such a hard truth to accept, but letting go of that control we try so hard to hold onto can actually be very liberating!
There are many areas in our lives where we crave order and control, but in reality it isn’t up to us and we can save ourselves a lot of pain and suffering if we can learn to let go of our need to control things or have things go the way we had planned.
This is true in our relationships, with our health, our finances and our jobs. We don’t have control over any of it and things will go wrong sometimes, no matter how much you prepare or plan ahead. That is just a fact – life happens. But God is always with us and He makes a way when there seems to be no way. I trust that promise completely.
When living with a chronic illness it is easy to let all sorts of negative feelings creep in. Guilt, loneliness, fear, frustration, these are all common emotions among spoonies, and they’re not the only ones or the worst.
The problem with letting such emotions linger is that they tend to cause havoc in our bodies, often making us more ill. It is important for people with any sort of chronic illness to find ways to reduce stress and negativity if they wish to feel any sort of improvement.
Living with a chronic illness like ME/CFS often means that you are housebound and unable to enjoy the outdoor activities you once loved. You might be like me, love nature and going exploring, but your condition has left you stranded in your home.
Although there is no magic cure to get you out and about, there are a few things I have done to help me enjoy nature while I remain indoors. There is a calm and peace that comes from being around trees and plants. Lets see how you might bring some of that nature indoors.
I actually left the house this week! Leaving the house is not something that happens very often when you have a chronic illness as debilitating as ME/CFS. Months can go by without seeing the other side of my front door. I have reached a point where I’m able to walk around the house daily without causing too much payback, but going out is still so utterly draining that it usually takes me days to recover.
This week I was able to leave the house for the first time in months. It’s my mum’s birthday today, but we celebrated a little early as our parents were here for their weekend. We went shopping together for the first time in ages!
It was a gorgeously sunny day, so I got dressed in a pretty floral dress and hopped on my wheelchair where I stayed all day. Knowing how taxing an outing is and how much sensory stimulation affects me, I tried to prepare as best I could:
At last the saga of the dust mites is over! The bugs seem to be gone after 2 weeks of intense cleaning and hoovering and constantly examining every nook and cranny of the house to make sure they hadn’t spread elsewhere and zapping every single mite we found!
If you don’t know the story about my bug infestation, you can read about it in an earlier post, here.
To say I am now paranoid about creepy crawlies is an understatement. They have really messed with my head. I can’t stop staring at every speck of dust to make sure it doesn’t move!
This past week we discovered that my bed, which was in the house when we moved in, had some bugs!
Not bedbugs thankfully, more like tiny dust mites or something similar. Teeny tiny white specks of dust that crawl around independently.
So annoying because now I cannot stop staring at every speck of dust I notice on any surface: does it move? Quite nerve wrecking!