My Life With Adrenal Insufficiency

5 Reasons Adrenal Insufficiency is like a never ending Merry-Go-Round

adrenal insufficiency

Adrenal Insufficiency is like a never ending Merry-Go-Round

 When Cortisol Levels affect the Blood Sugar levels.

Right now I feel like crap. It’s true. I’m not sure why or for what reason but I am really unwell. I’ve been laying in bed all day and I’ve not had the strength to even pick up a glass of water, never mind a computer.

I did check my messages once on my phone and have tweeted every now and again but when it comes to real blog work, I just can’t do it.

Usually I am unwell and I get exhausted. Usually with this illness, I feel sick 3-4 times a day and get weak and headachy but at the moment I am much worse. I feel much more weak and the stabbing pain in my muscles is unbearable.

I’m in pain which makes me want to cry. I want my husband to wave a magic wand (actually no- I can’t imagine him as a fairy). Let’s start again. I want my husband to wave a magic light saver (he is a star wars geek) and make me better. Now he tells me a light saver kills people! So maybe not! But please…do something! I am desperate to feel well right now.

I keep crying and moaning to John and saying please make me better but he is helpless and there really is not much he can do! I know he can’t really do anything to help me but I just ask him anyway.

I don’t know what’s wrong with me. My brain hurts to try and work it out. I have stabbing pains in my muscles, I’ve vomited, (although I do not have a bug). That was a response to the pain i’m in and is related to my adrenal insufficiency.

My body is weak and I feel distressed. I feel like there is no point going to hospital. They always say the same thing- you need to see an endocrine specialist- ask your GP to write to your consultant to get an earlier appointment. Unless your in adrenal crisis we cannot help you. I feel like i’m on a Merry-go-round that never stops.

So I lay here with my emergency injection kit ready- just incase I go into crisis. I am double dosing my steroids. We are told to double dose when we have an illness, when the body is in severe pain or we have hypo-adrenal symptoms. I’m having hypo-adrenal symptoms that’s for sure.

My husband rings the doctor and they often say, there is nothing we can do, ring your endocrine nurse at the hospital. The endocrine nurse is on leave for two weeks and the message says, ring the endocrine secretary. The Endocrine Secretary is away until Tuesday and we are left with two choices- ring the GP again or go to hospital.

I’m not yet in crisis, so I cannot go to hospital. They would send me home, the only choice we have is the GP again. Every time this happens and trust me it happens a lot we go around in circles. There is no “real instructions on what to do in this situation, although there should be- I know to double dose when my body is under added stress- but there is not enough info on this.

My husband feels I have blood sugar problems. You see most days I have these episodes where I suddenly go hypoglycemic and fall asleep. My body goes floppy and I get really ill. If I go to hospital they tell us to buy a twix from the vending machine and eat it and my blood sugars go back up and they send me on my way again.

Blood sugar levels can be seriously effected by someone with Addison’s disease or adrenal insufficiency. I don’t have to have diabetes but I still go high and low and it makes me feel really sick.

Well, someone who happens to have 2 sons with Addison’s Disease suggested I request a blood sugar monitor. She said, if I were to record my sugar levels on a regular basis, then this would give the consultant (next time I go) evidence that my cortisol levels are simply out of wack all the time.

I’m told based on a one off day curve test that my body absorbs my tablets perfectly but if it did why am I so unwell all the time? I do not believe my body absorbs my tablets properly. If it did I would theoretically be much better than I am. It is possible on the day I was tested my tablets got absorbed but on other days they don’t? How can a 9am-5pm day curve truly inform how much medication I need when my sugar levels go funny in the evenings and during the night and in the morning?

I believe I need a 24 Hour day curve but I’ve been asking for this for two years and not had one. I guess this is due to the cost of putting someone in hospital and testing blood- they want to avoid expenses like this- but then if these tests helped me get better treated, then I would not need to keep going to hospital of keep having major hypo-adrenal episodes.

I feel frustrated and I feel sick, pain, nausea, headache and weakness. However…I also have one other feeling and strangely that is “GRATITUDE” – because my husband managed to speak to a “different” GP to my usual one and they recommended (after we have asked for 3 months) that I get a blood sugar monitor and begin recording what is going on!

I feel like jumping for joy! Why when I have been asking for three months and been told-wait to see the Endo does the other doctor in my general practice- say, “I think she needs a blood sugar monitor to make a record so we can see what’s going on”! I feel like singing Allejuah.

Seriously- if I ask for something that makes total sense- I get rejected but today, another doctor finally said what I’ve been saying- make a record so we can see what is going on. She wrote a script and my husband went and picked up the monitor. We feel one step closer to proving there is something seriously not right with me.

So although I am frustrated and sick and annoyed because the whole NHS System feels so unfair, I do feel grateful because today we made progress- we can start monitoring my sugar levels.

When I was a child I used to go to the Barnsley Market and in the far corner was a wonderful Merry-Go-Round. I loved to go on it and choose a horse, to sit on the bus and go around and around. Being as sick as I am I often feel that I’m stuck on that merry-go-round.

I feel liked I’ve been sat on the horse with the green ribbon for too long and today, the Merry-go-round finally stopped for a brief moment and I switched to the horse with the red ribbon. I do hope this makes sense.

So today despite sitting here with my orange sick bucket and feeling like someone who has been beaten with a stick, I feel some gratitude for the Doctor who listened to my husband and wrote a prescription for something which could reveal a whole lot about my current health and for that I am grateful.

This is a long process and will take time and all though I will never be rid of my Adrenal Insufficency- I can one day get the right medical treatment- which I believe is the “Adrenal Pump” and when I do- maybe that Merry-go-round which my whole Family is riding on may just slow down permanently. That would be nice.

Here is my quote of the week

MerryGoRound

Adrenal Insufficiency does feel like a never ending Merry-go-round because:

-With Adrenal Insufficiency I am always waiting for my next appointment to help me get well.

-With Adrenal Insufficiency I am always being sent in circles when I’m having hypo-adrenal symptoms.

-With Adrenal Insufficiency, I never know what level my Cortisol is at.

-With Adrenal Insufficiency, I never know when the next life threatening crisis will be

-With Adrenal Insufficiency, I never know when a doctor will listen and help me rather than sending me to someone else.

Angela Milnes

5 Reasons Adrenal Insufficiency is like a never ending Merry-Go-Round

12 Comments

  1. Angela Milnes, your story is beyond touching… I feel such connection with your health dilemma . And while it might not be much consolation, at least you have been diagnosed with hypo / adrenal connection!!! I pray to be fortunate enough to get a definitive diagnosis and somehow begin to really live again !! I feel like the carousel rider , too!! So much going round and round and not getting to stop , dizzy from the continuous running round to different doc’s for REAL HELP FOR A REAL MEDICAL CONDITION! I sincerely hope you get on the road to recovery soon , and all the rest of us on this harrowing, life altering journey… Love and lots of luck to you, my dear! ?

    1. Thank you Jean…. Yes it takes a long time to be diagnosed. For me it took 5 years and then two years of messing around so fingers crossed they can start to make me more stable soon! Thanks for your comments! – Angela

  2. I can’t begin to imagine what you are going through. I sure hope that the information you learn from monitoring your blood sugar helps the doctors to make a breakthrough that can help you! Hopefully this is one step closer to getting off the merry-go-round on which you feel trapped. Well wishes, and thank you for linking up with #candidcuddles!

  3. I really feel for you. It must be terribly frustrating and it sounds as though the NHS really is not set up for dealing with this illness. You really shouldn’t have to be figuring this out on your own and there should be provisions in place for staff absences. I have no idea if it’s my adrenals (awaiting test results) but I empathise with the merry-go round feeling and the ups and downs. I’m sick of feeling so sick too. Hugs.

  4. That sounds awful. I’m so sorry you’re going through it. On the up side, I’m really glad the other GP listened to your husband and fingers crossed the future will be better. #AnythingGoes

    1. it’s not easy but life is never easy… Yes your right it is great the GP listened to me and helped me out! I do need to try though to contact the endo as i’m not getting anywhere and its a little frustrating. Will ring again today! – Angela xx

  5. I’m sorry you are battling everyday & feeling unwell. Are there no specialists that can give you proper treatment? I’m surprised it’s taken so long for them to monitor your blood sugar. I’m glad you have a new doctor who’s exploring more. Thanks so much for linking up with #candidcuddles x

    1. Thanks Becky…. it has been really hard and yes i’m so pleased the new gp is sorting things out blood sugar wise. I’ve just had another phone call and they will be testing my levels next week to see if i have become diabetic yet or if im still borderline. I dont want diabetes but the steroids i’m on…make me this way.

      I can however work hard to lose more weight and that will help me!

      Angela xx

  6. I don’t even know what to say to this – nothing I say is going to make you feel better. I am pleased that you finally found a dr who actually listens though. Hopefully that is a step in the right direction.
    I find it truly inspiring that you remain so positive throughout all of this process!
    Thanks for linking up to #AnythingGoes
    Debbie

  7. Thanks Debbie. lovely comments like yours keep me going. i need to be positive and yes…despite the difficulties…. it is a step in the right direction and as slow and frustrating as it is… i’m please i ma going somewhere!

    Angela xx

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