My Life With Adrenal Insufficiency

ME and Chronic Fatigue Syndrome

Journals

ME and Chronic Fatigue Syndrome

Well it’s been another difficult day. I slept all morning and all afternoon. Sylvia came home from school and her friend Mia came to play. John didn’t feel too great so he went to bed. Later we went to Tesco’s and it was funny because the person speaking over the loud speaker said, “Welcome to Asda”. Hillarious!

I was a bit naughty and spent money I was going to save. I bought some dresses to send to New Zealand for debs. They were marked down really cheap but I think I went a little overboard. I also bought myself a set of notebooks and a fancy pen. When Sylvia saw what I had purchased she was disappointed I hadn’t bought any for her, so we ended up sharing.

John has been quite dopey today. You see he has not been thinking straight or using his common sense when answering my questions. I realised that he had not taken his thyroid medicine. He does this once every few weeks, he forgets to take his meds for a few days and it causes him to crash and become unwell. It can be really difficult to remember to take meds daily. I have 20 tablets a da, so i know how hard it is.

Well, I started promoting my fundraising page to try and save up for the Hydrocortisone Pump that could help manage my adrenal issues better. I know this would change my life and allow me to have more energy and be able to do much more.

I feel a little a guilty to ask others but really how else can I do this? I may need to travel to US to see a specialist who can prescribe the meds or find a private endocrinologist willing to treat me in the UK. Fingers crossed, I can get the treatment in the future. It would improve my quality of life. I hope we can get money and that we can raise the money which is needed.

My arms have been in so much pain lately and I’ve had to rely on John to brush my hair but he’s a guy and can’t do it as well as i’d like. My hair has been looking really munted at the moment. Luckily my friend Lauren came round and she brushed it for me.

Yesterday I had a discussion with Sian about the fact I’ve had another ME setback. I guess when things improve and I start to take on more than my body can handle, I burn out again. I realised the benefit of having setbacks is that I’m learning exactly what my body can handle and what it cant.

As John drove me home it dawned upon me that I have been measuring my achievements solely by what I am capable of physically. Despite my time in bed, I have achieved so much in the last few weeks with Sylvia. Her reading skills are coming on leaps and bounds. She continues to get high marks in her spelling tests and is doing great in the daily maths knockouts. I know this is because I’m reading with her every day, helping her practice her words and testing her on her times tables.

So, although I’ve not been able to get up or go out more than twice in the past few weeks, I’ve done great as a mother helping Sylvia and just spending time with her in the evenings. Also I’m growing emotionally and spiritually and John has achieved some great things in the home, such as putting up the curtain rail on the wardrobe, organising our photos and hanging them on the wall.

We are also making progress with Yoda, he is beginning to realise that if he barks, we will listen and pay attention. This is great as we are trying to teach him to bark when he needs to go outside for the toilet.

Well this is what I learnt and I’m proud of myself that i’ve achieved so much given how unwell I am.

I wanted to end with a quote i’ve read recently by Marvin J Ashton,

“Do not allow yourselves to be made to feel in adequate or frustrated because you cannot do everything others seem to be accomplishing. Rather each should assess her own situation, her own energy and her own talents and then choose the best way to mould her family into a team, a unit that works together and supports each other. and only you and your Father in heaven know your needs, strengths and desires. Around this knowledge your personal course must be chartered and your choices made.

See you, Angela xx

4 Comments

  1. Angela have u thought about a rare disease specialist or changing endocrinologists? If u are on hydrocortisone or prednisone, maybe u need to switch, one is longer acting, and no one with this disease sleeps at night. Cortisol is lowest in am, then around 3pm, not 12 afternoon is when u should have second dose. The more steroids u take, the more u risk having Cushing’s disease, trust me, u don’t want that. When I was diagnosed, I was going to Dr for a year with kidney failure, enlarged heart, bleeding in kidneys, blood in stool, adenomas and polyps in stomach and neuroendocrine tumor, pernicious anemia, low b12 anemic of d and do low on potassium, I almost had heart attack, Iwas also diagnosed with poss thyroid prob. I never had bvomiting or diarrhea, but I have had bone and joint pain and stiffness every morning for years, DT told me it was because of osyeo arthritis which is also caused by this disease. I also had bad vitamin d fef which was causingsevere muscle spasms, that were llike convulsions. I love alone. How they found out finally what I have is I collapsedduring treadmill and rare ddiseasedDr told me my pituitarygland was almost empty and that iI should be dead. This disease is so rare, Drddon’tknow enough about it, we hhave to be our own advocates. Let’s do something do everyone can get that pump and have ins pay for it. Please tell me more about pump

    1. I already had cushings symptoms on too much thats how i gained my 6 stone of excess weight which im now losing! I have tried lots o things including different endos but its a long process and i see a new endo tommorrow

  2. There are doctors treating in ustates with pump, it is privately paid for under table. Being kept quiet.

Leave a Response

Comment moderation is enabled. Your comment may take some time to appear.

Share
Tweet
Pin
+1
0 Shares