Tuesday, June 21, 2016

My New Career

 I used to be a IT Professional getting paid the big bucks, but with AS now I can't sit down for that long without getting pain in my sacral joint and shoulders. Not to mention the brain fog which also kicks in too.

 What I do now, is I am a full time carer. I cook and prepare my client & their child's meals to cater for their special diet and extremely low budget. I also clean their house, do their washing and folding clothes. Oh and not to forget the shopping.

 I do this around my back and fatigue limitations. I cook or wash up for 15min at a time, because my mid-back muscles start spasming after that time. But I flip to other house work activities for 15min each and rest every 45min with the heat pack. I limit walking activities (like shopping) to an hour at most, because after that time my hips, knees, back, shoulders and kneck start hurting (& that is only from walking..not from lifting).

 I spread the washing & folding over the week, and primarily use clothes racks to hang clothes, as my muscles hurt even more when I lift items above shoulder height.

 When cleaning the bath or shower I still limit it to 15min and try to keep the scrubbing to a minimum, by doing it each week, because kneeling or bending over for anything over 5min stiffens my muscles & joints, or threatens to put out my lower back. The later also goes for vacuuming.

 But I am beginning to enjoy cleaning now. It is becoming a bit of a meditation. Providing I don't over do it.

 After 2-3hrs of chores (incl driving chores), my mind and body tells me that's enough, and I have to rest/sleep. So I can then be able to tackle the afternoon/evening chores, incl picking up child and preparing & cooking evening meal.

 Now I have to focus on fitting my client's home therapy exercise into their schedules. We already fit in the semi-regular trips to GP and specialists, but the doctors want to see more building of the supporting muscles. I agree.

 So this is my new job. I miss my old one, the money, and using my years of experience and my brain. But this is now more important. As I want my child & I to be as healthy, movable with low/no pain as we can with our Arthritis type disease, for the many more years that we have. (I am only 44 and my child who is has the juvinile signs of AS is only 13). I was already my child's carer, now I am my own.

P.s. after writing this, Meghan Trainor & John Legend's song "Like I am going to Lose you" came on. Which made me think of what we ALL need to do with our health/bodies: love them like we are going to lose them; don't take them for granted; "Use what we got, before it's all gone, 'cause no, we're not promised tomorrow".

Monday, June 1, 2015

Understanding your Energy Compromised Partner

Does your partner suffer from fatigue due to a autoimmune disease like Ankylosing Spondylitis, Lupus or Rheumatoid Arthritis? Or maybe they have Chronic Fatigue Syndrome, Fibromyalgia, Parkinsons or MS?

There are lots of diseases and conditions which can comprise a persons energy level. Not only do these people find they have less energy, they also usually find it takes more of their energy to do the same physical tasks.

When you are in a relationship with an energy compromised partner it is easy to become resentful because they can no longer contribute the same amount of working effort into the relationship that you do.

But what if you looked at it in a different way.

A energy compromised person experiences approximately about 2/3rds of the energy than of a healthy person. And that is on good days.

So that means instead of the 105hrs of energy an average person has a week to spend, (I.e 15hrs awake time per day). A energy compromised person would only have about 70hrs. Yes that's right. About 35hrs of their week is lost and used on resting or sleeping, because their body needs it.

But that means they should still be able to work about 25hrs a week, (i.e 2/3rds of 40hrs), right?

Not necessarily. The answer depends on who does the stuff around the house, looks after the children; or if you wanted your partner to have quality time with you and the family, at any time.

If you want to spend your quality or free time with your partner, (eg eating together & watching TV of an evening, and going on outings on the weekend), that would take an average minimum of 30hrs /week. (i.e. 2hrs/weekday and 20hrs on the weekend).

So first off, take the 30hrs of quality time from the 70hrs/week. That leaves 40 hours.
(Now if you believe your partner deserves less free/quality time then yourself, because they can't work as many hours as you, then book yourself into counselling now)

Does your partner do part or all of the household chores?

Calculating that the average household chores, (listed below), as taking about 30hrs/week. If your partner does all of the housework, take the 30hrs a week off the remaining 40hrs.

  Estimation of time spent on average household chores in a week:-

  • Washing dishes - 7hrs
  • Washing & folding clothes - 5hrs
  • Cleaning - 4hrs
  • Vacuuming & mopping - 2hrs
  • Preparing & cooking meals - 7hrs
  • Shopping - 2hrs
  • Ironing - 3hrs

If your partner does all of the household chores, plus looks after school age kids (Incl. school pickup/drop off and homework), they really wouldn't have any hours left to be able to work.

If you don't have any kids, and your partner does all, or some of household chores, yes they maybe able to work. Depending on their limitations though. But your partner still needs your help and understanding on the days they do work. Because a 4hr work day may mean they need 5hrs rest time that day (or need to crash completely on another day).

If your partner is at home with infant/s, forget about the housework.. they would be using all their energy on the child, before you even get home from work. Spending 10hrs/day looking after young children, is 100% of their 70hr quoter per week. That's way more then 25hrs/week of work. If you don't want your partner to have a physical or mental breakdown, then don't bat an eyelid when they ask you to look after the baby in the evening and cook dinner, as well as ask you to help with majority of chores on weekend. When your partner is energy compromised and you both have the added responsibility of young children, sacrificing part of your free time is necessary to give your partner back some of their time, for recuperation & quality time with you and the family.

If your energy compromised partner works full time (i.e 38-40hrs) per week, they are doing more then what their body is really able to do per day; and would most likely be comatose everynight. They would struggle contributing to any household, yard or family chores even on the weekend, without compromising their health and  time with their partner & family.

Remember these are good days too. Bad days can mean 1/3 of a normal persons energy. This is about the equivalent energy that you would feel when you are experiencing a bad flu.

Other things that should also be taken into consideration when you are thinking about your partner, are: physical limitations; medication side effects; and time required to attend physicians, specialists and physical therapy sessions.

Your partner is probably already experiencing guilt or frustration not having the normal energy levels anymore. Please don't be angry or resent them for something that is beyond their control. And for the sake of your relationship don't be afraid to see a counsellor, if you need help to get your head around what they are going through.

Remember why you chose this person to be your partner in the first place. I am sure it wasn't for their work capacity.

Sunday, March 22, 2015


There are 5 different categories of medications that aybe prescribed or suggested by Rheumatologists to assist in the management of Ankylosing Spondylitis (AS):

  • Non-Steriod Anti-inflammatory Drugs (NSAIDs) - Ibuprofen, Naproxen, Diclofenicac (eg Voltaren), Indomethacin,  Piroxicam, Sulindac & Celecoxib.
  • Disease Modifing Anti-Rheumatic Drugs (DMARDs) Traditional Non-Biological Methotrexate & Sulfasalazine.
  • DMARDs Biological/TNF blockers - Adalimumab, Etanercept, Golimumab & Infliximab.
  • Steriods/Corticosteroids - Prednisone, Prednisolone & Triamcinolone. 
  • Analgesic - Paracetamol, Opiod Analgesics (contains codeine), Tramadol & Morphine

NSAIDs & Steroids are used to reduce inflammation. While Steroids are strong and generally used for short term treatments, NSAIDs are more used for a longet term, though can have side affects.

DMARDs work on the autoimmune system rather then directly on the inflammation. The TNF Blocker DMARDs work better then the Traditional, for spinal specific inflammation.  

Analgesics are used only for pain relief, because they have no anti-inflammatory effects.

Always consult with your Rheumatologist or General Practitioner regarding drugs and supplements to manage your AS or other medical conditions. 

Friday, March 20, 2015

The Good Grief Process

Throughout the diagnosis process and management process of your AS you, your partner and family & friends will experience grief at & in different stages.

Whether it be yourself having difficulty accepting or understanding the diagnosis, your partner getting frustrated that you can't do the things you used to, or your friends not understanding why you can't attend their dinner after a day's work.

But experiencing grief is normal and a needed process in human psyche. Thus why I call it "The Good Grief Process".

You probably already have come across K├╝bler-Ross' 5 stages of grief. The four stages that can be experienced before the last stage of Acceptance are:
Deniel, Anger, Bargaining & Depression.

They are not necessarily all experienced, nor necessarily in that order. But the needed part is to get to the Acceptance stage. When you, your partner or family are stuck in the previous stages you may need to seek counseling assistance.

Part of the grief process can be actually recognising you are experiencing it in the first place. Actually realising what you are experiencing and how you are reacting, is normal, sometimes helps you move out of that stage.

Are you in one of the four pre-acceptance stages?
Are you experiencing frustration and anger at the Doctors because they can't fix you?
Are you frustrated or upset because you can't do the same things you used to? Or your current medication doesn't seem to be working?

People experience AS in different ways, at different levels. Therapies/Medications/Diets that works for some, may not work for others. But there are a lot of things out there to try, support groups to listen and help, and heaps of research material.

Yes accepting is hard. We aren't in Kansas anymore Toto. We all generally have to adjust our life style and accept we have limitations now. Once we, the AS Shaker, reaches the acceptence stage, we begin to feel we can manage it better. Yes! We might even get to still have a life and enjoy it too!

I will write more on how to help others go through the good grief process.

Tuesday, February 24, 2015

Ankylosing Spondylitis Myths

The following are myths that you may come across in your search for a diagnosis of Ankylosing Spondylitis (AS):
  • Only those with the HLA-B27 Gene can get AS - X Wrong! You can still have AS without this gene. In fact 5-20% of people with AS do not have this gene.
  • Only men can get AS - X Wrong! Yes, AS is more prominent in men. But women get it too! This blogger is one of them. If your GP or Rheumatologist tells you you can't have AS because you are a woman, walk right out of there and see someone else! There are plenty of us ladies in the online support groups who will attest to this. One statistic says one in four of those with AS are women. 
  • If you don't show inflammation in your blood (CRP & ESR) you don't have AS - X Wrong! 30-50% of people with AS don't have high inflammation CRP and ESR markers in their blood. 

Monday, February 16, 2015

Symptoms of Ankylosing Spondylitis

The symptoms of Ankylosing Spondylitis (AS) can vary in different people. These symptoms are also common to other ailments, including other Autoimmune diseases. So alone these symptoms can not be used to diagnose AS:

  • Back pain - lasting more then 3 months
  • Stiffness and pain in lower back, hips, tail bone or bottom
  • Stiffness in morning, or after a period of in-activity
  • Fatigue
  • Pain in other non spine joints and muscles
  • Bowel inflammation
  • Inflammation of the eye (uveitis)
  • Skin Problems such as psoriases
  • Pain in the heel or under the foot

For more information on diagnosing AS, please see here.

Diagnosing Ankylosing Spondylitis

Ankylosing Spondylitis (AS) can take a long time to develop. The symptoms are the same or similar to generic back pain and other autoimmune diseases. So for a diagnosis the Rheumatologist needs to distinguish it from other possibilities by looking for specific AS only characteristics.

Along with showing general symptoms of AS, these characteristics below, combined, are generally used in diagnosis:

  • Grade 2 bilateral sacroiliitis OR, Grade 3 or higher unilateral sacroiliitis via Xray - in layman's term this means the signs of damage caused by inflammation of sacral joints (sacroiliitis) seen in both of the sacral joints, OR a definite vision of damage or complete fusion, seen in at least one sacral joint.
  • HLA-B27 gene or family history of AS - 80-95% of people with AS have the HLA-B27 gene. Note having the HLA-B27 gene doesn't meant you will have or get AS. Only 9% of the population have this gene, and only 5% of those develop AS. You can have AS without this gene, or any previous history.
  • High levels of C-reactive protein (CRP) and raised erythrocyte sedimentation rates (ESR) - determined by a blood test, these levels indicate inflammation. Not everyone who has AS actually show high levels of inflammation in their blood. This is only seen in 50-70% of people with AS.

If you have any suspicions that you may have AS, please speak to your General Practitioner to get a referral to a Rheumatologist to run the necessary tests.

A description of the sacroiliitis gradings can be found here: