Fibro Blog #28

Pain: 7.5/10

Tiredness: 7.5/10

Mood: 😖

This week has slam-dunked me through the basketball net so hard the air’s deflated right out of me. I wanted to rate both my pain and tiredness at eight but I have the feeling that would tempt fate to prove me wrong. I don’t need anything else on my plate right now.

Do you ever have days where you just don’t want to feel or think, so instead you make yourself so busy you don’t have time to create a thought or process an emotion because you’re too wrapped up in the tasks you’ve given yourself?

That’s me right now.

A burst of anger a few days ago has led to a massive fibromyalgia flare up. I have bruised my hands from the explosive rage fit I had and damaged my shoulders too. Life can get a bit hectic even for me some days and when I break, I break hard.

My sister’s wedding broke me physically and then my guinea pig was put to sleep on Saturday after days of no sleep from feeding him every 1-2 hours. I slept almost 16 hours after that.

I was going to await moving to Manchester before asking for another referral from my GP as it’s been difficult to access any kind of treatment in Milton Keynes. After a recent dispute with my partner, it’s unsure as to whether I will move sooner rather than later.

I’m also currently going through CBT with IAPT – Talk For Change on the NHS after a ten-eleven month wait on their list. I didn’t like my therapist to begin with but since my last session where I burst into tears over the degrading relationship between me and my mother, he’s grown on me.

This whole concept of ‘pacing yourself’ is something I’m finding very difficult to achieve but I’m understanding that it’s key to managing this condition.

The Energy Envelope

One way to explore the idea of limits is through the concept of the Energy Envelope. You can think of your situation in terms of three factors:

  1. Available energy: The energy you have. It is limited, and is replenished by rest and food;
  2. Expended energy: The energy you lose through physical, mental & emotional exertion; and
  3. Symptoms: fatigue, brain fog, pain, and so on

When your symptoms are low, you push to get as much done as you can. But doing more than the body can tolerate, you intensify your symptoms and crash. You then rest to reduce symptoms, but then, if you feel frustrated and try to make up for lost time, you may plunge into another round of over-activity leading to another crash.

There is an alternative to this cycle of push and crash: living within limits. Your activity level and the way you live your life affect your symptoms. If you honour your limits, you can gain some control over your symptoms and bring predictability to your life…

Anyway, since being declined all help in terms of disability benefits (PIP, ESA, universal credit, DSA for university) I am starting the appeal process for my last academic year of DSA 2018-2019 and reapplying for this academic year 2019-2020.

My support services coach is sure it will be approved as the only issue is that my application arrived -as it was posted at the end of August because I went through government benefit options first- a few days past the deadline.

I did explain to the organisation I was only diagnosed with this disability in May just after losing my full-time job as an Editor unfairly due to having no contract with the company. The Student Loans Company is not a particular understanding or empathetic body. I have written a crude angry poem aimed at them since then.

I’m still taking a cocktail of pain medication on a daily basis, alongside herbal remedies and natural supplements:

  • Magnesium
  • Omega-three
  • Vitamin-d
  • Naproxen
  • Omeprazole
  • Ibuprofen
  • Tramadol
  • Co-codamol
  • CBD oil

These are in conjunction with the massage chair which I use for my back at least three times a week, the heat setting is to die for and this is the best contraption for my fibro flare-ups. I highly recommend them as you can get cheap ones for £20 or less on eBay. Mine’s a HoMedic brand.

Learning to treat yourself well can mean the difference between controlling fibromyalgia symptoms and letting them control you, says internist Jacob Teitelbaum, M.D., author of several books on fibromyalgia, including The Fatigue and Fibromyalgia Solution (Avery 2013). This is the advice I’m trying to live by.

Many sufferers of chronic conditions feel isolated and misunderstood. Close family members, partners, friends and co-workers may not be able to empathise or may not believe the individual when symptoms arise because the illnesses can be invisible. To connect with like-minded people I am on My Fibro Team, a social network for spoonies, and it’s really helped me think more positively because all its users are so supportive and friendly. The community gives advice as well as builds friendships and provides a platform to ask questions.

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    Keep up the great writing.

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