Tag Archives for " Road to Recovery "

Update: When Intention, Creativity and Chronic Illness Collide

When intention, creativity and chronic illness collide, BLOG

This month has been quite productive! I can't believe it's almost gone already. I'm once again taking part in this thought-provoking monthly link-up with Sheryl from A Chronic Voice. I love the prompts she comes up with each month - they really force me to consider things I might not otherwise think about and perhaps, in a way, that helps to keep me focused and accountable too. This month's prompts are:

  1. Adapting - to intentional rest and fasting
  2. Practicing - watercolour blending
  3. Realising - it's hard to stick to a schedule
  4. Celebrating - a year since my parents moved to the UK
  5. Inviting - other chronic illness warriors to share their story
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Reflecting, Aiming, Expanding, Focusing, Refreshing

Jan 2018 Reflecting Aiming Expanding Focusing Refreshing BLOG

I'm so happy to finally be taking part in A Chronic Voice's monthly link-up! I have been silently following along from the shadows for months, then last month I finally wrote the post, but of course I waited till the very last day and actually missed the deadline by 4 hours because Sheryl works on Singapore time. 

This time I'm doing a bit better, I am writing this post with 6 days to spare. Wow, I must say I am impressed with myself. I am trying hard to get into a good and productive as can be routine, but before I delve into all that, here are this month's prompts:

  1. Reflecting (on the year that's passed)
  2. Aiming (to get out more)
  3. Expanding (my social media presence)
  4. Focusing (on making more art)
  5. Refreshing (my soul)
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My First Outing in 5 Months

First outing in 5 months BLOG

As anybody with a chronic illness can tell you, holidays are a stressful time that we often dread. With many more people around, an increase in noise, activity and an abundant selection of unhealthy food choices, it is inevitable that we will experience an increase in unpleasant symptoms and will at some point need to isolate ourselves in order to rest and recover.

I am fortunate to have a very considerate and understanding family who keep noise levels low, TV off most of the time and serve me like royalty so that I don’t have to exert the little energy I have. It is frustrating when you want to join in and help others, but are bound by your condition to sit still and rest for much of your day.

Since May last year, I have experienced some great improvements in my health and am no longer bedridden, but in August, after a day out with the family, I had a massive flare up which lasted months. I don’t think it was just the outing that caused the flare up though, I was also going through a horrible histamine reaction which was exhausting my body. I ended up staying indoors for 5 months before venturing out, just after Christmas.

Prioritising rest and sticking to my low histamine keto diet and supplements seems to be paying off, I had minimal payback from Christmas Eve and Christmas Day festivities, so a couple of days later was able to enjoy a whole afternoon out with my parents! Continue reading

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Life is like a twisting roller-coaster ride

It’s easy to get caught up in all the negatives that happen in life. Things don’t go your way, you fall ill, you lose people or your job, you feel sick, there are just so many things that can bring us down, but this is just part of life.

The minute we stop expecting life to be a fairytale and accept reality, that’s the moment we open ourselves up to the truth and the freedom that comes with it. It’s hard to expect perfection at all times. It’s hard on ourselves and on those around us. Nobody can live up to that expectation. Life doesn’t work that way.Continue reading

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Update: current ME/CFS flare is slowing me down

It’s hard to deal with these unexpected flares or relapses that seem to come out of the blue.

You end up asking yourself a million questions. What did I do wrong? Did I eat the wrong thing? What did I do yesterday or the day before to cause this much pain? Why am I so weak today, did I overdo it this week? Was the TV too loud? Did I miss the signs and push too hard? Did I get over excited about something?

It can be a bit worrying when you are sure you’ve done everything right, but your body fails you anyway. The key is to not get distressed, because that just makes things worse. Stress absolutely is your enemy. Continue reading

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Are you struggling to adjust after an ME/CFS or PVFS diagnosis?

I am regularly contacted by people who have recently been diagnosed with Post Viral Fatigue or Chronic Fatigue Syndrome. They are often scared, worried and confused, but also hopeful and determined to return to their normal life. Their question is usually the same: what can I do?

Having a diagnosis of PVF or CFS is difficult to deal with because there is so little information out there and often doctors don’t know what to tell you. They haven’t been trained in the management of CFS and are often ill-equipped to give advice to newly diagnosed patients.

In this post, I will outline some of the main points you need to be aware of as a newly diagnosed patient. Things your GP might not tell you. I am not a doctor, but I am a patient, and I have spoken to many other patients with decades of experience in living with this condition.

Doctors call these long-term sufferers “expert patients” and the advice they gave was vital in my initial stages of PVF/CFS. I will summarise that wisdom below in the hopes that it will help many more.Continue reading

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Update on my itching and ME/CFS flare

Low spoon warning

It’s been a while since I wrote a personal update. I have recently been extremely drained and weak, so haven’t been very social or active online. My primary focus this month was on my itching. I wanted to try to get it under control as it was really getting me down, much more than my ME/CFS does. I was in tears and so very frustrated. The scratching was utterly exhausting and to top it off, I caused myself a massive ME/CFS flare too!Continue reading

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How I’m tackling this ME/CFS flare

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.

The heavy ME/CFS passenger

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.Continue reading

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My wheelchair and I: shopping with the family

wheelchair in nursery

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:Continue reading

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