PIP forms and a bit of ‘wabbing’

I posted on my Facebook page recently about having to complete three sets of PIP forms in a short timeframe as my three older boys are now over 16 and need to convert from DLA to PIP.
I just rang to get a stay of execution for returning all three sets of forms. I took advice on my page, thank you to one of my followers, ‘healer, heal thyself’ . I advise others but often forget I need to heed my own advice so I booked an appointment for help checking over the forms before I send them. But, it’s not for two weeks, so now I can do some more…
‘Wabbing’ – a term someone else added to that thread (thank you) which behaviourists will get; aka ‘work avoidance behaviour’. This is going to be my new ‘go to’ expression.
Legitimate wabbing – I am printing reams of paper and finding all the reports from last year, of which there are so many, due to the EHCP transfers.  Why am I having to do EHCP transfers and PIP transfers all at the same time? Answers on a postcard.
The reports include Ed Pysch reports (20 pages) social assesments of care needs (12 pages) and care and support plans (10 pages) plus random psychology reports and school reports and anything else I can add to the pile. And, all to the power of three. I will use them to extract pertinent phrases and attach them in entirety to the forms, when I complete them.
Medium legitimate wabbing – writing bits for EHCPs, doing direct payment returns, liasing with college/school, paying carers, cooking boys’ dinner and a hundred and one boring household chores.
Downright wabbing – internet shopping, cruising airbnb sites for holiday accommodation, meeting friends for coffee and a walk (if friends have ASD children and we discuss things like EHCPs, does that make it legitimate?) some reflexology for me as I haven’t had any therapies for years, stroking the cat.
Maybe even writing this blog is a form of wabbing too? I can justify writing as marketing for my book ‘A Parent’s Guide to Coping with Autism’ –  but this is not really a marketing blog so borderline wabbing?

Tired. Tired. Tired. What does adrenal fatigue feel like?

I am in post Christmas crash. I was diagnosed with adrenal fatigue over seven years ago but I have probably had it far longer. I was certainly building up to it for a long time.

Adrenal fatigue is common in mothers of children with autism. It is also common in children or adults with autism and is due to high, prolonged levels of stress. I won’t go into it from my children’s point of view; this blog is to help the mothers (or fathers) who might not even know they have it themselves.

What are the symptoms? Why do we get it?

When we are in stress mode, our bodies go into ‘flight or fight’ response and produce extra adrenaline to get us through periods of stress. This is quite normal and not harmful, it’s what gets us through exams, interviews, public speaking and so many other aspects of life which cause us short term stress.

What is harmful is when we are under stress nearly all the time without a break. It may be that our children need watching every minute of every day, that they too are stressed and behave in ways that are hard for us to manage, that we are simultaneously fighting the education departments or schools while trying to single handedly look after our children.

I had years of fighting including three unneccessary tribunals for three of my boys to get full time ABA paid for. Unnecessary, because they should have got what they needed without a fight, necessary because without ABA they would not be the boys they are today, high functioning and doing well.  I had years of managing their programmes at home, recruiting tutors, liaising with everyone. Some days I felt like I never wanted to talk to anyone about the boys ever again. But, when dealing with any funding issues or anyone in authority, I had to maintain a calm exterior to get what my boys needed. It meant I suppressed that stress and kept going.

Long term stress causes adrenal fatigue because it wears out the adrenal glands which are trying to continually produce adrenaline, something they normally only produce in short, intermittent bursts. Combat soldiers suffer from it as do high powered businessmen and I once read an article that prisoners also suffer from it.

The main symptom is overwhelming tiredness. Tired. Tired. Tired. Like jet lag tired, like you have been up all night tired. All day, every day. Most people wake up refreshed from a night of sleep, we, who probably sleep really badly, wake up feeling worse.

I wake some mornings feeling nauseous with tiredness. The nausea can last all morning. I cannot eat, I feel like I am sleep walking. My eyes prickle causing the computer screen to look blurred and anything else I attempt to read. I just want to stay in bed forever and sleep.

When it is really bad, I try to grab a few hours of rest in the afternoons. What I often cannot do is actually remove the stress from my life.

People advise us to rest. ‘ Don’t do anything stressful’ they say, ‘be kind to yourself’.

But, we can’t rest. We can’t remove our stress. Our stress is our children. We cannot abandon them. They cannot remove their own stress without our help.

If you are lucky, you might have family support to give you a rest. If you don’t have that, what do you do? Struggle on. I did for years.

One day, I seriously crashed. It was like a physical breakdown. I was trembling, I was almost hysterical – it had been sparked by dreadful situations in LEA school transport and at school for my boys which I had to deal with on their behalf. I started having hot flushes hourly. I was not menopausual at the time but it kicked me into temporary menopause. This was due to my body having to force itself to produce adrenaline, a hormone, and having no resources left to do so. My body switched off other hormones in order to produce the one it needed desperately. I found this out later, but at the time, I wondered if I was having a nervous breakdown. I couldn’t have one. There was no one else to step into my shoes.

Conventional doctors do not acknowledge adrenal fatigue. I was offered HRT (which I didn’t need). I’m sure I would have been offered sleeping pills and anti depressants if I had really explained to the doctors how I felt. Those things would not have fixed it. I needed rest and no more stress, but that was not possible at that time.

I was diagnosed by a nutritionist with a 24 hr saliva test which measures the level of adrenaline throughout the day. I was flat lining. My levels on waking were dangerously low and stayed that way all day. I had almost no adrenaline to get me through the day and it was made worse when I did need some in a stressful situation.

Seven years on and I am so much better. I now manage my condition almost like I did with glandular fever as a teenager. I know I can keep going through a stressful period but when it is over, I will get payback and crash. I know some of my triggers better now. Driving is one of them. Driving in central London is stressful as is motorway driving and I try to avoid long jorneys if I can. I juggle a very minimal social life. Mostly, I am too tired to go out in the evenings but I can manage if I never do consecutive nights out.

When I am tired, my body craves carbs and sugar to stay awake. No need to tell you what that does to my body weight. When I am well, I try to cut back on those things and I struggle to lose the pounds I have put on when in severe adrenal fatigue.

My advice to anyone who thinks they recognise these symptoms?

Don’t rush to see your GP. Conventional medicine won’t really help but it might be a good idea to get your hormone levels checked including your thyroid which is often affected too and can be treated. You could be anaemic which causes extreme tiredness so ruling out other factors is useful. But, at the end of the day, adrenal fatigue is not easy to treat.

Rest. Rest. Rest. If you can. See a nutritionist if you can. I was treated by many people over many years including homeopaths, acupuncturists and nutritionists for supplements to boost the adrenal glands and to support me physically while I recovered. I also saw a qualified doctor who treated patients with ME and chronic fatigue.

You may look well but tell other people if you don’t feel well. You might get some support, some precious hours to yourself to rest. Acknowledge that you do have a condition which is real and not just in your head. Learn to say no to anything you don’t have to do.

Full recovery may not be possible but you can learn to manage adrenal fatigue.