This week has been really interesting. I had three fantastic days. My view of fantastic, is very different to what someone else would call fantastic. In fact I was thinking about what a successful day is for someone like myself with chronic illness and for me it’s the little things like making lunch, resting enough and being able to spend time with my daughter.
So Monday through to Wednesday I slept from around 10am until my daughter got back from school. I needed the rest. I then had energy to help with dinner, go on a small walk with Sylvia, spend an hour with my daughter doing crafts and complete two hours of blog work.
On Thursday however things were different. I did not take a long nap. In fact I had a cleaner coming over to hoover the floors, wipe surfaces and disinfect the home. I have help once a fortnight and it really does help me. However on a day when people visit or I go to appointments I struggle.
On Thursday I tried to take a nap in the afternoon but I was too awake. I then went to my second weight watchers meeting and went on a small walk. By the time I came home I was feeling quite unwell.
I knew I hadn’t had the correct amount of rest I needed and maybe I had just overdone it. I wasn’t sure what was going on but I had no strength to do anything. I could not think straight and just started to feel quite weak.
I assumed I must be really tired but then the all too familiar symptoms of low cortisol began to creep upon me. It’s funny how I don’t realise until certain symptoms occur.
For me the very first sign of low cortisol is tiredness, fatigue and not being able to concentrate or focus. When this happens the very fact I struggle to think straight means it can take a few hours to work out why I feel so unwell.
However I began to get a headache, feel nausea and a little dizzy and wobbly. I finally realised something was off. So I checked for the usual culprits and causes of me running out of cortisol too soon.
I ruled everything out that could be affecting me and checked for an infection. The two things which make me really unwell the most are skin infections and having a period. In fact I will get very unwell and low in cortisol for a few days before my period is due and of course during my period.
However I’ve never had a regular period in my whole life so I never know when it’s due and can’t know until it actually arrives. This means I can suddenly get unwell for 3 to 10 days and just have no idea why until my period actually starts.
Anyway I checked my body and discovered a new skin infection under my breast. I swear I get them quite regular, at least once or twice a month and it’s something I really struggle with.
I’ve spoken to my GP numerous times about the recurrent infections I get on my skin. He says due to being on steroids (hydrocortisone) for my Adrenal Insufficiency my skin is more likely to get infections and It will also take longer to heal.
So I took a shower and used the fungal cream I have to start the process of fighting the skin infection.
It’s amazing how ill I can become from a simple infection. It can cause symptoms of low cortisol and can cause me to collapse, have diaorreah and head towards Adrenal crisis which when left untreated will lead to death.
Luckily I figured out what was wrong within about 5 hours of feeling unwell. I doubled up the base rate of hydrocortisone on my pump to help me get through the infection and used the cream I am prescribed for skin infections.
I found myself laying in bed at 2am feeling wide awake from my extra medication. I was tired, exhausted and fatigued. I had the usual low cortisol stabbing pains and aches in my legs and body but was too alert to sleep. That is my side effect from increasing my steroid dose, my brain becomes very alert.
It’s frustrating. Being wired to me is the lesser of two evils. I either let my body recover from low cortisol and am wide awake all night and all morning or I don’t double up and my symptoms worsen until I end up in hospital heading into a crisis.
So that is where I’m at. I had three brilliant days and now today, Friday I am wide awake having not slept since Wednesday night and as a result my body is shattered. Yet I can lay in bed and write this on my iPhone because my mind is alert.
I will now try to go to sleep and at least get some rest before my daughter comes home from school. I will then play catch up for a few days as my body recovers and hopefully by Monday I will be back to feeling okay.
It’s a vicious cycle and for someone looking at me from an outsiders perspective I imagine it would be very hard to understand. One minute I am taking a walk with my daughter to collect stones and the next day I can’t get out of bed.
People will see on Facebook that I have been to weight watchers and not understand that within 3 hours of my meeting I went downhill.
To some it may appear strange that I could go weigh myself yesterday but today I could not get out of bed to go to my daughters assembly and see her get a certificate.
Luckily we have Facebook Live and my husband did a live video so I could watch Sylvia getting her award.
A leader at my church told me that people see me do wonderful things with my family. They see the things I make on my blog, the places we go on social media and all that I achieve, yet I am only able to make it to church 50% of the time on a Sunday morning.
I explained that although it may look like I am living a normal life and one might think I’m choosing not to go to church, the truth is I always go when I’m well because I really enjoy my church and love to attend. However I simply cannot go when I am unwell or recovering from an episode of low cortisol.
I have a pump to manage my Adrenal insufficiency better and to help me stay out of hospital but the reality is 50 per cent of the time on a Sunday morning I am low in cortisol, suffering adrenal insufficiency symptoms, exhausted from being wired or recovering after the fact.
It’s 50/50 for everything I do. I have attended one in four of my daughters sports days. I have missed out on all her Easter plays. I have missed all but one Christmas play. I missed her Church nativity which I would have loved to see in 2013, 2014, 2015 and 2916 and I was able to see it in 2017 as I was well enough that day.
I’ve missed one parents evening but attended all the rest. I have booked to go to blogging conferences and cancelled at least half at the last minute.
I have doctors appointments which I can not always attend and have to reschedule. There are evenings when I can go with my family to the shop and bump into people I know and then they read the next morning on Facebook that I am really unwell. Yet I was seen out maybe only 12 hours earlier.
The good news is I have learnt to live with this condition. I have a routine and I pace myself so I don’t overdo it. When I get low in cortisol and we work it out my family knows that I need to rest and recover and it will take one or two days possibly longer.
I can be well one minute and not well the next.
Many times I’ve been out and had to go home due to suddenly feeling too unwell to continue. This is my life. I am now used and my family are too but those around me are not .
I understand completely how bizarre my illness may appear, but it is a fluctuating condition and things change from hour to hour and day to day.
It’s great because when I am unwell like today and laying in bed, I have my loyal companions Yoda and Casper. They are Bichon's and they often need company and attention and we can be together a lot when I am unwell.
So that’s a summary of my week and a summary of how things are for me in general. I’m hoping to be back to normal by Monday and until then so am going to rest up and take things slow.
Angela
It's so easy to ignore the signs our bodies give us when we have obligations, but our bodies know...and they are very loud about telling us when we need rest or medical attention. Glad you figured it out.
It can be!
Angela, this sucks. Do you use the word suck in your country? Seriously, what you wrote about people not understanding, this is why people who live with chronic disease often choose to suffer silently and hide what they are going through from others. They either pull away completely from society or push it too hard, doing more than they should and continue to live ill. We left a church of 18 years after I began to struggle physically because of the constant push and stress from others to perform and "have enough faith". I feel your struggles and my heart goes out to you. You are in my prayers often. I'm still believing for more stronger days for you!
Yep I use the word Suck. It is so hard for people with illnesses like this as it's an invisible illness and appears so strange to those who don't experience it. Luckily as I share and spread awareness more friends and family understand how it is more. If someone is close to me or takes the time to really know me they will see how it is, but from an onlooker it can seem strange. I love my church and although some have questioned me, most are really supportive which is good.
That IS really good. I’m encouraged by your support system.
It is good. My parents live in NZ and when they came to the UK for a year, they also got to know what it was really like for me so my mum understands me now, whereas when she was just in NZ she couldn't see what things were like. I think when people understand how things are it helps feel less judged.
Yes, I believe so too.
Having those sudden ups and downs must take a lot of getting used to. Going to your meeting and becoming sick shortly after is probably hard to explain to someone who isn't familiar with low cortisol symptoms!
Yes someone who has not seen this would find it hard to understand and I could come across as someone who is sick when it is convenient but that is not the case.
I imagine this would be tough to live with. I hope you do feel better on Monday!
It is very hard to get used to but I am at a point where I am learning to live this way. It can just be hard at times and frustrating.
I have a friend that I went to highschool with, she was diagnosed with Lupus. We're friends on Facebook, and she is always posting how wacky her medications make her feel. It's crazy how one medication effects someone totally different than another.
Yes there are always side effects from medication and it is different from person to person.
Medications can be great in one way and awful in another, I have a whole host of side effects which I just put up with as I know they help make me so much better in other ways.
Its very important to listen to our body and be conscience of whats going. It can be hard to pay attention enough when you are very preoccupied. I loved reading your story, hope you feel better!
So sorry to hear you were not feeling well! But glad you are on the mend. Enjoy the rest of the weekend!
I'm sure the good days are so very appreciated. I'm sorry that it's something you have to deal with, I really am.
That would be such a rough choice to make. But you have to do it as opposed to ending up back in the hospital again. I am sorry that it comes down to that kind of choice though. Hope this week is better.
Oh wow. I am so sorry to hear about all that you had to go through. I wish you the bets in your recovery.
Sometimes we really need to choose on what will be the best way for us. I wish you well and hopefully recover faster than what is expected. Just be positive.
Wery informative and helpful article. Thank you for sharing with us. Congrats for your great work!
I sincerely hope you get well soonest to catch up with your daughter. Because you are both worthy of every single moment of it. It must be very frustrating, but time will come when all of this suffering will come to its end.
Oh goodness! I hope you start feeling normal again! Lots of rest!
I am sorry to read about this. I am sending healing energies to you and hope you feel better!
Did you ever hear about bioidentical hormones for the adrenals? That's what I use instead of convential drugs and they are so much better for your body to use. I know there is a bioidentical pharmacy in the u.k. They could direct you to a doctor.