Things Too Wonderful

Chronic fatigue is a nasty thing!  There are differences, but it also goes by the name of burn out, sometimes stress and, at its most extreme, M.E.   Most people are never properly diagnosed but have years of feeling exhausted all the time; wondering why they are too tired to get up and feeling like they simply cannot take another step.  It can cause pain in every joint in the body, headaches, increased infections because the imune system is shot through, irritability, mood swings, ‘brain fog’ and confusion, sometimes it can feel like a complete personality change.

My husband Steve has suffered from this for a long time now.  It was manageable before his illness.  He was always tired but he got by.  When his appendix burst and he spent six weeks in hospital (see background) he was pumped full of the highest doses of antibiotics imaginable.  We are grateful for that - they saved his life - but his imune system was totally wiped out.  He also suffered something called adrenal burn out.  This is when the body has suffered so much ongoing trauma that adrenal gland cannot stop producing adrenaline so the body is in a constant state of flight or flight.  We were not designed to be in that stae on an ongoing basis and the body cannot cope - it’s exhausting, and leads to many of the symptoms mentioned above.

Living with someone who is living with burnout is not easy.  It is difficult seeing someone you love in so much pain, and not being able to do anything about it.  The personality changes can be frightening too: for me, to see someone who has always been in control (and he was the Captain of a warship in the Middle East during the war out there - he’s not a weak man!) but to see him unable to cope with even simple things was awful.  There are also the angry, irrational outbursts.  The hormones and chemical imbalances in Steve’s body cause such a frustration and irritability sometimes that he can get incredibly angry - seemingly for little or no reason.  We had to find ways to deal with that, and keep the kids from being affected, because often their shouting was a stress trigger.  Chronic fatigue can also cause a terrible depression.

Then there’s the total exhaustion.  Five days out of seven Steve just couldn’t get out of bed.  It is improving now, for which I am so thankful, but there are still times when he just can’t move, and he has to pace himself very carefully.  And that means he can’t do everything he wants to - or everything we want to do as a family.  While we have tried to not let it affect the children, it does.  ’Family’ days out were me and the kids for a long time.  That is hard too.

Cronic fatigue seems to go in waves.  There are days when Steve can get up and do jobs and seem absolutely fine.  There are other days when  he can’t get out of bed, and when he does he is in severe pain, or confused, or angry.  It is impossible to plan, or to go back to work.  On his good days he would be fine at work - on his bad, he couldn’t cope at all.  What I found the hardest was never knowing quite who I’d find when I got in from my work: a positive man, up and about and cleaning the kitchen for me… or an irritable body beneath the duvet… or Steve in the depths of depression, having spent most of the day in tears.  There were days when I dreaded opening the front door.

Coping with Chronic Fatigue

I believe that there are quite a lot of people reading this who are also suffering from Chronic Fatigue, or who are living with someone who is.  I really want to encourage you to hold on in there.  God has not abandoned you, and it will get better.  Can I make a few suggestions which have really helped me?

Understand that most people don’t understand!

Unless people have been through burnout, chronic fatigue or stress and some level themself, or have someone close to them who has, they are unlikely to really appreciate what you are going through.  It’s not that they don’t want to, but it is such a complicated illness, and has so few obvious signs that people really don’t understand it at all.  Even some doctors!  I know that most people in our church don’t understand why Steve is off work, and can’t commit himself to much, or help with very much at the moment.  They see him on a Sunday and he looks absolutely fine: chatty, gregarious, fully involved in the meeting. 

But they don’t see him when he crashes exhausted into bed that afternoon, or wakes up the following morning in a deep depression, angry with the world and frustrated with the pain in his body.  And why should they understand?  I hope they never have to.  But it is hard when you are in the middle of it, and well meaning christians make comments about how he should be back at work by now.  You have to forgive and let it roll over you. Don’t allow it to make you bitter - it’s really not worth it.

Find some support networks

Having said that the majority of people will not understand, it’s really important that you find some people who do! We could not have got through this without the support of our friends.  We have a few people who understand completely and who we know are praying for us.  You need that.  If your Church is small and you can’t find anyone there, go on some forums, or contact me on here!  You need a place to let off steam and say how you really feel.  You need prayer and support to get through this and come out the other end sane, trusting God and with your family still intact.

Find some doctors who can help.

Our doctor offered medication for depression and told Steve he was lucky to be alive and he would have to put up with the rest.  It wasn’t helpful.  He was willing to treat some of the symptoms but never even looked for a cause. 

We were very blessed to be able to go private and find a more holistic practitioner who found a lot of the root causes of Steve’s symptoms and treat them - and he is improving.  If you live in the UK I would recommend Dr McDonogh  www.EagleClinic.com  (Sussex) without hesitation.  His tests were thorough and professional, his treatments have been holistic and effective, and he has been incredibly supportive throughout.  In terms of the pain in Steve’s body, we found excellent chiropractors in Ian and Richard at  www.Wellbeingclinics.co.uk  (Derbyshire) 

You will have to travel, you will have to pay (unless you have excellent insurance).  It is definitely worth it!  If your doctor can’t help, find someone who can.  Don’t give up on that.

Don’t focus on ill health  

There is the temptation sometimes to talk about nothing but health - and ill health at that!  It really doesn’t help.  Steve has spent hours on the internet, looking at all his symptoms and finding possible treatments.  (I found a list of applicable symptoms once and diagnosed that he was pregnant!) He has stopped doing that now and is trusting the professionals he is under.  We have also made it a rule in our house that we only talk about how he is feeling once a day.  Otherwise I am always asking him and he is always telling me, and it becomes the whole focus of life which it shouldn’t be.

Focus on the healing.  He is/you are recovering.  Not sick.  There is a difference.

Realise how this is affecting the whole family.

Everyone in the family is affected when one person is ill.  That is a fact.  Our children were affected - our son more than our daughter - and that is really hard to deal with.  We talk more with them now so they know what is going wrong.  I am also very aware that when they get upset about seemingly irrelevant things, it’s actually their Daddy they are worried about.  It’s important that you let the school know if you are in a similar situation.  What I find difficult is when they ask why Daddy isn’t better when they have prayed so much for him.  I want to know that too!  I hope they are learning persistance in prayer through this.   Pray for your children, and get other people to pray for them too.

And make sure you make time for yourself, if it is your partner who is ill.  You can’t be there all the time.  I spent a lot of evenings in the gym, when the kids and Steve had all gone to bed (at about 8pm) - it saved my sanity!!  Now Steve is improving I am not nearly so fit!  You are probably working twice as hard at the moment, not only bearing the burden of his illnes, but also doing his jobs around the house as well as your own, trying to keep on top of everything practically, and staying to be strong for the family.  You need some time out.  Look after yourself.  My biggest fear was ‘what is something happens to me too?’  Look after yourself.

Pray small prayers as well as big ones

I spent a long time praying for Steve’s complete healing, and feeling disappointed when it didn’t happen.  I am still praying for complete healing,  but I am also praying for the smaller blessings: that he will be able to get out of bed in the morning, that he will feel well enough to come to Church, that he would have a positive day.  I am seeing more answers to prayer now, and they are building up to his complete healing - but in smaller steps.

Don’t lose your hope.

‘Hope defered sickens the heart’ and I know what that sickened heart feels like - it’s when you go for prayer time after time and the healing never seems to come.  It’s believing the prophesies that tell you Spring has arrived, but never seeing the ice melt.  It’s getting home from work in the afternoon and hoping he’ll have made it out of bed - and he hasn’t.  It’s easy to lose heart and lose hope.

Trust God.  He does understand, although I often thought He didn’t.  His timing is perfect, although I wish it were more in line with mine.  He knows what He is doing. And I will understand one day.  Keep hoping.  Keep trusting.  Keep praying until you get the answers you need.

Ask God for the ‘treasures of darkness’

Isaiah 45v3 says ‘He will give you threasures of darkness.  Riches hidden in secret places.’ 

I take that to mean that there are lessons to be learned and treasures to be found in the dark times that you could never ever find when life is going well and everything is easy.  Make a list of all the things you have learnt through your difficult times.  It will be long.  I got a whole new perspective on this horrible time when I realised that.  It is a constant choice to look for the treasure, but it is so worth it!  For a long time I felt like I was stuck down a deep dark depressing pit, with no sign of light at the top and no way of escaping.  So what do I do?  I can wallow in the mud at the bottom and feel sorry for myself, or I can start digging for some treasure while I’m down there.  Yes it’s a choice. It’s easier to wallow but better to dig.

 Know that this will not last forever

You will get through this.  I have often thought we wouldn’t.  I have often wondered if our marriage would survive it, or if Steve would ever live a norml life - and we would ever have a normal family life back.  I have even wondered if I would ever get my husband back.  It will happen.  We are seeing signs of improvement.  Steve is at school as I write this, listening to readers.  He couldn’t have done that a month ago.  He is still signed off work until October… but he hasn’t missed Church for five weeks now.  He got out of bed before we left for school yesterday and the day before. 

If you are suffering chronic fatigue, or living with someone who does, you will understand just how big those little things are!   Look for the little signs of improvement.  You will get there.

 God Bless you and keep you and I pray that you will see healing come soon.  Please let me know how you are doing.

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