Pain is something born

Pain is our norm

Pain is our life as a whole

Pain is embedded in our soul

It’s part of us

It’s like being thrown under a bus

It’s what we daily bear

It’s just always there

Poem by Chrissy Siggee

Archived in: Living with Chronic Illness

My response:

Sure – and my car just needs more gas to become a spaceship!

(I wish it was that simple)

Archived in: 🦋 Living with Chronic Illness

A typical specialist report. Undecipherable and needing a degree to understand. He lost me after radiological activity noted. Huh!

Anyway, I have a CT-guided L4/5 facet joint block with cortisone appointment in Newcastle on Dec 16th. Even if this is slightly successful/helpful, it will be just a temporary fix and will proceed to a radio-frequency neurotomy in the future (Please explain) which I will need to travel to Sydney for but no future surgeries are expected. There’s a lot more about the sacroiliac joint being a pain generator. What does that suppose to mean? Butt what I do know is that it’s painful to sit.

On a more positive, understandable note, my chronic fatigue and fibromyalgia symptoms have eased some. Sleep has found to an acceptable pattern but could be better. Fibromyalgia pain persists, especially with these crazy summer storms, high temperatures and sudden weather changes.

Day time naps are a new mandatory activity. Thankfully, only the arthritis medication is needed – at least until cortisone injection.

I’m now exploring a new ‘normal’ although it’s slow and frustrating since every day is different. I have been able to take short walks even if it’s just around Bunnings or shopping malls. The problem I have with walking the aisles of Bunnings is that I stop often and buy stuff – like plants and anything related.

I have been very blessed and encouraged by get well cards, text messages, emails and prayer support. Thank you.

– Chrissy

Archived in: Living with Chronic Illness

Chronic Illness - Reminders to Self

• I did not cause my illness
• I can do everything right and still struggle
• Take one day at a time at my own pace
• Pain is real but it’s invisible to others
• Pain levels change without an invitation
• Asking for help doesn’t make me weak
• If I did it today, it doesn’t mean I can do it again
• Ignore those who think they have all the answers
• Rest when I need it
• It is OK to cancel plans

Archived: 🦋 Living with Chronic Illness

To date there doesn’t appear to be any significant improvements. However, we have found that the new medical team, tests and treatments have been very informative and helpful as I move forward to recovery.

The medical team reports in brief have indicated that the most recent Fibromyalgia and Chronic Fatigue flare-ups were so severe that they triggered a sudden and massive biological shift (how the body works). These biological shifts usually happen as we age. In simple speak, my biology flipped on end overnight. Now that we understand what happened we can work on adapting our lifestyle for an acceptable recovery. All blood tests results remain at good levels with no sinister underlying causes.

Arthritis Findings in brief: The spine surgeon is pleased with the low general wear and tear after the previous surgeries in 2017. No further surgeries are anticipated in the future. However, arthritis has increased in its severity and has extended from the previous L4 to beyond S1. A bilateral CT guided Facet Joint block Injection has been ordered to be done by a radiologist. There are no guarantees on its success, and the surgeon has already advised that he may need to follow this up with an injection of a high dose (unpronounceable) medication into the area, but deeper into the spine which can only be done by him. A new year decision.

Moving forward will be slow but we can look forward to some positive outcomes. With so many life-threatening reactions, most medications have been ruled out. Planning ‘one day at a time’ is the number one priority.

Thank you for all for continued love and support.

Norm & Chrissy

Archived in: 🦋 Living with Chronic Illness

Although I live with chronic illness, and it’s definitely not a laughing matter, I couldn’t resist smiling when I saw this. I hope it makes you smile too.

Archived in: 🦋 Living with Chronic Illness

Symptoms of my Chronic Fatigue Syndrome (CFS) diagnosis confirmed almost a month ago are still very unpredictable and challenging. My routine sleep hasn’t yet found its new balance and over the counter medication and natural remedies haven’t helped. After my body reacted badly to the prescription medications my doctors won’t take any chances with my every increasing allergies. My reactions have often been serious. One reaction required a 3am visit by paramedics who, after stabilizing me, transported me to the Emergency Department. It took almost two weeks to recovery from that reaction.

I believe that the number of restful sleep hours I do have most days are assisting with my overall recovery. For now, while irregular sleepless nights and unpredictable fatigue bursts persist, I’m thankful for all the restful sleeping hours I do have. There doesn’t seem to be any explanation for these hours on end of no sleep, only that it’s a part of CFS. As I’m reminded by my medical team and the Australian Chronic Fatigue Support Foundation, it is why CFS is recognised as a ‘chronic’ illness. Every victim, I mean patient, is different just as it is with Fibromyalgia (FM). For now an arthritis pain medication I’m not reacting to is helping me while my regular exercise daily walking routine is non-existent.

Norm and I often received ‘opinions’, ‘remedies’ and non-qualified ‘medical advice’. Most advice comes with no knowledge or experience of CFS, FM or even arthritis. We know this is just their way of wanting to help and see me well again but it can be frustrating.

Although the CFS symptoms can often be suffocating I have found my wakeful hours more productive this past week. I have enjoyed reading who-done-it mystery books as well as getting back into writing. Finding time to do a few of the things I once enjoyed, even if it’s at a much slower pace, has helped with my healing.

I can’t manage anything much in the garden beyond watering or picking a few vegetables. Norm, although not thrilled about it, has been willing to follow directions on small projects like removing end-of-season plants and trimming. When we first designed the garden, we did so with low maintenance, dodgy knees and backs in mind in the future and it’s paid off. We’re reminded often how grateful we are for our son’s skills and expertise. A once lifeless paddock of a backyard is now a well-drained, safe and functional area which has become my oasis. A garden filled with seasonally changes, life and even rest. The most rewarding part of the garden is to sit and enjoy the rewards it brings including the wildlife that visits daily.

Archived in: 🦋 Living with Chronic Ilness

By the time you read this, I should have had my surgery, or going into theatre. I’ll be home tonight. It will be over and done with and ready for physio before Christmas. It’s just another small arthritis hic-cup in my life.

Archived in: 🦋 Living with Chronic Illness