My Adrenal Crisis and the truth about how I feel.

My Adrenal Crisis and the truth about how I feel.

Well I wasn’t planning on writing a post today. In fact I have been avoiding writing any posts simply because of the way my week turned out. – I had my first adrenal Crisis in six months.

Many of you wont have heard of Adrenal Insufficiency (aka Addison’s Disease) but I was diagnosed with the illness in August 2013.

In a healthy body the adrenal glands produce the “stress hormone” Cortisol. When the Adrenal Glands fail and stop working, they no longer produce Cortisol and you are then labelled “adrenally Insufficient”.

The only way to provide the body with cortisol is by taking regular steroid “hydrocortisone/prednisone tablets” 3-4 times a day. Without this medication my blood pressure would drop dangerously low resulting in a coma and death.

So how do I know how much physical or emotional stress my body is under each day and how do I know what dose to take?  -The answer is not simple. In fact, I do not know! The doctors do not know! This is because every day is different. I am not a robot. I don’t do the exact same thing each day- although I do spend a lot of time resting and sitting in bed.

I also don’t know how much emotional stress I will have to face each day.

What I do know is I am given a set amount of steroids to take and am told to “Double up” if my body is under extra physical and emotional stress. For example if I were to visit the dentist, fly on a plane or catch a virus- I would double my meds for three days. I’d also have to double up under extreme emotional stress such as a court case or the death of a loved one.

So why did I have an adrenal crisis this week after six months of prevention? This time it was emotional stress. I wont say who, what or why but I’ve been placed under extreme emotional stress over the past three weeks and the final blow came on Sunday during a meeting where I had to defend and stand up for myself. My body could not take the pressure and I went into a crisis at home.

What happens in a Crisis?

Well the symptoms can differ for different people but for me they are always the same. I have sudden sharp pains in my chest and bowels. I had to run to the bathroom with sudden diaoreah. The pain is unbearable, if not worse than labour contractions. I cry and moan and  I want to vomit. John grabs my sick bucket due to the extreme nausea. I throw up. Then my blood pressure begins to drop. I cannot think straight, I cannot stand, my muscles are weak, my body is wobbly, my head is dizzy and I start to slide in and out of consciousness.

Now that I know my own symptoms, (and my husband knows them) we are able to recognise  “this is the real thing” and get my emergency injection. John grabs my kit, snap the glass vile, drawers 100mg of Hydrocortisone into a syringe, attaches a huge needle and injects me in my leg.

Does this hurt! Hell yes. Does my husband enjoy jabbing a huge needle into me? No! The injection site is traumatised and it hurts for hours, but not as much as the stabbing pains and the dull ache of my adrenal glands under my chest.

What Next?

Once I’ve been injected with meds, my husband calls an ambulance. They come and take me to the local A and E. My BP is low, however the injection has an immediate effect and begins to raise my cortisol levels.

I lay in the Hospital bed recovering from my incident. My BP is still very low but slowing increases. I need to have my bloods checked. I need to have my heart monitored. I am cannulated and given Fluids along with paracetamol for the adrenal pain.

The Doctors send me upstairs (after hours of waiting). I lay in the assessment unit unable to sleep due to the steroid meds. Steroids make you feel wired. my BP is checked through the night. I am given more fluids. The next day, I am seen by a team. They want to know what caused my crisis. As soon as my BP is back in range, I am told to go home, double my steroids for three days and then drop back down to normal.

I am left feeling weak and exhausted. My sleep pattern is out of wack. I cannot walk. My muscles are sore. After a few days my body returns  to my regular, sore, painful and tired state and I continue the process monitoring the stress levels on my body.

The Emergency Injection

Addison’s disease/ Adrenal Insufficiency is a rare illness. Unlike Diabetes or other endocrine disorders the hormone level cannot be measured in an instant. There is no pin prick test, therefore the chances of a crisis is increased.

Having an emergency Injection can be Life saving. I have learnt after having 9 crisis since 2013, that the sooner I am given an injection the sooner I get better.

If I am injected at the scene, I return to normal within 48 hours. If I have to wait until I arrive in hospital, my stay in hospital in longer.

In November 2014, all pharmaceutical companies in the UK ran out of the emergency steroid medication that I need. I was not able to renew my script. I used my last injection this week. I no longer have another injection. I am told by Doctors I need to carry one at all times, the NHS cannot provide this. This is a nationwide issue and there are Adrenally Insufficient adults and children out without emergency medication.

Adrenal Insufficiency is a killer. I see articles in the news and hear about deaths every few months. It really is a scary thing. Research show that people with AI have a shorter life expectancy rate.

The Cortisol Pump

I want to raise the funds to get an “adrenal pump”. This is a small machine, similar to a diabetic pump which slowly releases cortisol into the body at a set rate. it also has an emergency option to release the right amount during an adrenal crisis.

The pump would be great because Cortisol would be released in my sleep to ensure I have the energy and strength to get up on a morning. Tablets do not provide this until 1-2 hours after absorption. This means I cant physically stand in the mornings. (I can sit and type or read) I cannot do the things “normal people” do in the morning.

My body spends the day recovering from the fatigue I have in the morning and this has a knock on effect during the day causing me to feel chronically fatigued. This is why I need to use a wheelchair. If I stay in bed and don’t walk around I can manage my health. If I stand and walk, I get dizzy, nauseous and sick. It is better to not stand up.

However in a real world, I have to stand. I have to do things as a parent, I cannot sit in bed permanently. This would be misery. My health would not be cured with a pump, however my morning fatigue and knock on tiredness would significantly improve and I might be able to do much more ‘normal things”.

I am blessed I can sit and write and use my brains. I can blog. This is my world. This keeps me sane and happy. I have developed friendships with people around the world and am so so happy about this.

To get the Adrenal Pump, I need to be patient. I have to wait for the UK government to approve the meds – which may take 5-10 years or I could travel to the USA and get everything sorted over there. This would be expensive. Flights, hotels, specialist fees, blood tests, the Adrenal pump, lines, needles, 1-2 years supply of meds. I worked out I’d need £9,000 to get started and cover the first two years of treatment.

I tried creating a GO fund me account. It failed! No one was interested. Well that’s not true, I received 2 small donations which I am truly grateful for but this was not enough to get us to the airport.

Instead of give up I devised a plan. I decided to Blog about my health, along with the things I’m passionate about. I figured if I could build a successful blog, I may be able to save the money myself. I made my “5 year Plan” I intend to raise the money before my 37th birthday, before my daughter turns 12. She turns 7 next week.

I would have loved to give her a Mad hatter’s tea party and create all the little cakes and biscuits, baked and made decorations but I cannot. I don’t have the energy. I booked a party  at a  local play area and the party will be catered for by them! It costs a bit, but I got a good deal in return for blogging about the party location.

So, until I earn the money I need to improve my life and that of my child and husband, I will continue to have many days in bed. I will continue to blog about my Family, our experiences and our life- I’ll even continue after getting the pump- I have fallen in love with blogging.

I have never felt happier since starting my Blog. It is my “happy place” and helps me feel relaxed and less stressed. Daysinbed is a place that I can share my difficulties and hope to inspire others. I can also record the adventures of my family and write funny and hilarious lists, share brilliant DIY tips and blog about our Family dog Yoda.

I did not expect to write this post. I can’t believe how long it is but I have gotten my feelings out and written them down- now it is time to share.

Angela xx

If you would like to contribute, Share or Retweet my Gofundme URL, It would be much appreciated.  http://www.gofundme.com/Angelamilnespump Even the smallest donation can help improve my quality of life.

 You can read more about my Adrenal Experiences in the Adrenal Diaries. 

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Angela Milnes xx

38 Comments

  1. D
    16th May 2015 / 3:16 pm

    I m so sorry for you, i can understand how very difficult is for you. My small daughter have AI, sw cah. Maybe you should try hydrocortisone at least 5 times a day or prednisone. It will improve the quality of your life and your AI will be better managed.

  2. Stacey
    16th May 2015 / 8:59 pm

    Is the pump available in the U.S. ? I have Addison’s and so does one of my friends I went to school with.

    • 16th May 2015 / 9:33 pm

      There are a limited number of specialists in the US who I’ve heard do treat with the pump….but it’s still very very new and very hard to access. The pump is generally available to people with tablet/absorption issues- who cannot absorb tablets.

      In the UK, however and in Europe trials are slowly being done to help children with AI and CAH and a new trial is taking place at a hospital in the UK- (for adults with Addison’s) with a particular focus on whether or not the pump improves fatigue.

      I do know of Addison’s patients in the US whose lives have been changed by the Pump and I believe more work must be done to not only reduce adrenal crisis but to help people with the symptoms they suffer daily.

      As steroid medication in the UK is free for Addison’s patients, the government cannot commission the use of the pump publically- until they have evidence it is the best way froward. It may not be for all AI patients..just as the diabetes pump is not necessary for all diabetic patients….but it will certainly benefit many- I believe this wholeheartedly.

      I believe the costs of the pump/meds would benefit the UK government as it would reduce ambulance call outs, blood tests, hospital stays and so forth. Awareness is the way forward and I’m hoping in the future we will have the Adrenal pump- just as diabetics have the diabetes pump. It just takes time- but there are Doctors out there that are working hard to improve AI, but they are few and far between.

      Some people may disagree with me- that the Adrenal pump is not the way forward. It may not be for them- but it is for me!

      I will write another post in the coming weeks on the Adrenal Pump using the research I have found so far.

      Angela xx

      • Daniela
        9th June 2016 / 5:34 pm

        have you looked into Dr. Michael Lam and what he knows? https://www.drlam.com/articles/adrenal_crash_and_recovery_cycle.asp
        Maybe he has info on the pump? How do you know when one has a severe case of AF or actually has AI? I do not want to ask my friend but anything can cause a crash for her, anything, even feeling joy, and her symptoms are pretty bad including cognitive impairment where she struggles to find words, words are jumbled, can’t walk, has ringing ears, cold, clammy hands/feet, extreme lethargy, etc….and has to cocoon herself until she recovers. So, a bit challenging for me to navigate but will still send her msgs even though she cannot respond to let her know I am thinking about/praying for her, etc…..too much to write about, gonna keep this relatively short. Heartbroken but at same time hopeful and committed to doing whatever I can to help/support, in the right ways for her. Need to talk w/others who are also in severe stage so I can gain more insight. Thank you!

  3. Zoe
    16th May 2015 / 9:38 pm

    Hi

    Im glad I have found your blog. Just diagnosed with AI, just had my training on emergency medication and practiced injecting an orange!! Not sure if I would be able to do this to myself. All new to me answer seems scarey xxx

    • 16th May 2015 / 10:09 pm

      Thanks Zoe. We do not have to go into adrenal crisis and the more managed our condition is, the less likely we are to crash. This is why I want to raise more awareness. I was just writing my own feelings on the matter. I’m glad it helped. Angela

      • Zoe
        16th May 2015 / 11:09 pm

        Your feelings are similar to mine. It’s exhausting with 3 kids and job/house to run. It’s good to know there’s others out there with same problems, worries and fears. At present my adrenals are making cortisol just not enough. So in 3 months time I’m having more testing to see what’s happening next. My dosage will be tweaked accordingly. Your blogs very informative and I’ve shared with my friends as your explanation is much better then mine. Thanks again, I look forward to your posts xx

        • 17th May 2015 / 12:31 am

          I hope you can get the best dosage. The less the better as steroids…can affect our weight and if you can come off then all together before the adrenals fail completely all the more better! Good luck with everything and thank you for sharing! Angela x

  4. BeckyB
    16th May 2015 / 9:39 pm

    I’m not sure why you think it’s easy to get a pump over here. Is there somewhere in the US that just give them away that easily?

    • 16th May 2015 / 10:24 pm

      Clearly you have misunderstood and made several assumptions. I never said it was an easy process and I never said the US just give them away, your putting words into my mouth with your sarcasm.

      The adrenal pump is the same machine as the diabetic pump and is available to the public through the company Medtronic both in the US and in the UK. I could get one tomorrow if I had the cash and a script.

      The real issue is that Addison patients are entitled to free medication in the UK and Endocrinologist in the UK are somewhat controlled by the NHS and told what they can and cannot prescribe.

      Even if a doctor here felt it was the right way forward, they cannot prescribe the medication because prescribing it- would force the NHS to provide the pump for free. Therefore my only option is to travel overseas and go private.

      The pump is not for everyone- but it is the way forward to me and I am basing this upon the medical research which I have read up until now.

      Angela x

  5. 16th May 2015 / 9:54 pm

    This made me extremely sad for you. It’s amazing when you know someone’s personal story. I am so sorry you have to go through this. I am glad blogging has helped you. It has also helped me as I was out of depression.

    • 16th May 2015 / 10:13 pm

      Thanks Susan. I appreciate your comments. I didn’t plan on writing about this but the incident happened and so I got blogging. The online community can help improve awareness and help with mental illness. It is a new and different form of support and has makes me happy giving me more purpose and direction than before. Angela

  6. 16th May 2015 / 11:42 pm

    Do you ever think – why me? I’m sorry honey it’s blinking (not swearing!) rubbish! Can you get an injection from the states too in the short term – even if the pump is not forth coming? Can’t believe the UK has run out?! Sounds awful :(. As a mother somehow the health you never worried about is now extremely important … I can help with a mad hatters tea party – next year if you want to give it a shot? xxx
    Mudpie Fridays recently posted…Happy Days Linky #5My Profile

    • 17th May 2015 / 12:50 am

      Hey there, thanks for the lovely comment. I have an Endo appointment at the NHS hospital on 15th June and will not be leaving the hospital without a powder and liquid substitute! (or at least a script for one). I find the NHS to be very rubbish at the moment..and there is a huge delay in appointments. When the specialist says they need to see you in 8 weeks, it takes 4-5 months. Things are delayed for so long and this seriously delays any improvement to my health. I’m still having tests which…could have and should have been done a long time ago but the lack of Doctors/pay/appointments means we are told to learn to live this way and wait for our public appointments.

      If I was loaded, I’d go private and my health would probably be much better. I’m going to do this once I raise the funds!

      I did feel mad at the NHS as I was put on too much steroids for the first year of my illness and this made me gain 6 stone. I could have avoided this and much more if they had seen me on time. However they are now trying to help me lose the weight (though dietician appointments). The system is not perfect but it is free and I am grateful for that!

      Your offer to do a Mat Hatters party next year is so kind. Luckily my mother is coming to visit from New Zealand next May and we will give my daughter the best 8th birthday ever lol :).

      Thanks for stopping by-I truly appreciate it- Angela x

  7. Sandra Middleton
    17th May 2015 / 1:17 am

    Hi Angela,
    Thank you for sharing your crisis experience.
    I have had Addison’s for 11 1/2 yrs (since diagnosis anyway, have had it longer than that). I live in Australia and every summer I go into crisis at least 2-3 times. My husband is a retired paramedic so he is good at giving my emergency injection at least. In Australia the pump is still in the trial stage. We cannot even get the duocort yet. It is always a struggle between knowing your body and how much steroid you need, then not having too much to put on extra weight (which most of us seem to do, I know I have).
    I know what you mean about wanting to do all these wonderful things and then when it comes to the time having no energy. With one auto-immune disease we tend to collect others; diabetes, thyroid, coeliac, chronic fatigue etc… So it is never just one illness and becomes a juggling act.
    Know that you are not alone, put one foot in front of the other each day and I hope things get easier for you.
    Blessings, Sandra

    • 17th May 2015 / 1:28 am

      Thank you Sandra. I’m glad you get it! I put on six stone with the steroids and became pre-diabetic. I’ve been on a diet since October 1,400 calories a day and have almost lost 2 stone with no exercise. ( http://www.daysinbed.com/losing-weight/ )

      Good luck to you. I’m following the Pump trial in Australia. My sister is a Doctor in NZ and hopefully all the data and evidence from UK, AUS, USA, DENMARK will help us in the future.

      Angela xx

  8. 17th May 2015 / 3:08 pm

    I think it’s a sad state of affairs when you are told you need to carry a certain medicine to potentially save your life and then told you can’t have it! This sounds like an awful condition to manage and I can’t even begin to imagine how hard it is for you. It is amazing that you remain so positive! Good luck with your fund raising.
    Debbie
    http://www.myrandommusings.blogspot.com
    P.S I’ve followed you back 🙂
    Random Musings recently posted…X Is For X Factor Of WritingMy Profile

    • 17th May 2015 / 7:40 pm

      Yes Debs, it’s not an easy thing to deal with..but we are progressing in the right direction. Angela xx

  9. 17th May 2015 / 9:05 pm

    I have never heard of this condition, but it sounds horrendous and frightening. Am I right in reading that there are no emergency injections ar all? I find that horrendous and inconceivable:( no one would diabetes would ever be treated that way. I hope that you are able to raise the funds you need and I will make sure you give your blog my support x
    Laura’s Lovely Blog recently posted…BEN’S ZONE: How to Make a Tofu PressMy Profile

    • 17th May 2015 / 10:23 pm

      Hi Laura. There is no emergency solu cortef available and has not been since last year. Some of us can get our hands on a similar power based med, but it would mean mixing the solution up and then drawing it up to inject- I would do this if I could get it but I can’t even get that. My good friend Rachel Pelger started a petition many months ago (as her child as the same issues as me) and we are fighting for awareness.

      Here is the Link to the Facebook page trying to fight AI in the UK- Saving lives for steroid dependants
      https://www.facebook.com/rachelpeglersavinglivesforsterioddependants?fref=ts

      Here is my GOFUNDME link http://www.gofundme.com/Angelamilnespump If anyone would like to donate, share or Retweet!

      It is such a rare illness and not enough has been done.

  10. 18th May 2015 / 11:43 am

    I’m so sorry this happened Ang. And I’m so sorry you were put under such terrible emotional strain. I hope the situation has been rectified and you can put it behind you and you won’t have to face any further upset. You should spread the word, and keeping sharing this post to raise awareness and funds. You are such a special person with a beautiful blog, I wish you the best of luck xx

    • 18th May 2015 / 12:13 pm

      Thanks Becky 🙂 I will keep sharing! Thanks for the support!

  11. 18th May 2015 / 12:06 pm

    Oh, I had no idea about anything like. It sounds so shocking and what an awful thing to have to deal with. You are so brave to share. I can’t believe that medication and treatment like this are delayed, it’s another thing that shows the NHS needs investing in.
    Jenni – Odd Socks and Lollipops recently posted…What Family Means To MeMy Profile

  12. 18th May 2015 / 8:21 pm

    I commend you for sharing you journey, I know first hand chronic illness can be hard especially one as scary as yours and you never know how people will react to you. I was diagnosed with MS 5 years ago and thankfully much healthy than most who have it. Good luck with everything and keep sharing!

    • 18th May 2015 / 8:35 pm

      Thanks Nicole. You are spot on there! Not all the responses are positive but the general support is very good and I will share my experiences in a hope to make a change in the world.

      Angela xx

  13. 18th May 2015 / 9:30 pm

    So sorry Angela. Listening to your story makes me realize that our health is so important and I give kudos to you for still having such a positive attitude. I am sorry to hear that your “gofundme” hasn’t worked…it’s sad that the people who really need help don’t get it because the assholes that are scamming people are too busy getting it. Thanks so much for sharing your story with #momstermondays and I will continue to send positive thoughts your way!
    Domesticated Momster recently posted…Dear EveryoneMy Profile

  14. 19th May 2015 / 2:00 pm

    Angela I am so sorry to read this. I had no knowledge of this condition and it just sounds so dreadful. Please let me know if I can help by promoting your blog and your posts. I run a bloggers group- are you in there. Also if you tweet me post I am more than happy to RT them for you. I hope this post is read by lots of people and that your blog becomes very successful and you are able to make the journey to get the medical help you deserve. Thanks for linking up #bigfatlinky
    al recently posted…The Baby Show 2015 – NECMy Profile

    • 19th May 2015 / 4:43 pm

      Thankyou AL. I will bear this in mind. I’ll look for your blogging group in a few days when i’m feeling a bit better- the work load is full on and it’s also my child’s party so may be offline quite a bit.

  15. 20th May 2015 / 1:51 pm

    My gosh, that sounds horrible. I’d never heard of this illness before, so thankyou for sharing it and raising awareness. I really hope that you manage to get the treatment and equipment you need. You are someone who truly deserves it! xx
    Rachel @ Parenthood Highs and Lows recently posted…Don’t Abuse the NHS!My Profile

    • 20th May 2015 / 2:06 pm

      Thank you. Hopefully the government will improve the NHS as promised! We shall see!

  16. 22nd May 2015 / 7:37 am

    I’m so sorry to hear about your health struggles, I do hope you manage to raise enough for the pump, it sounds like it would make a real difference. X
    Julia @ Rainbeaubelle recently posted…ButterfliesMy Profile

    • 22nd May 2015 / 2:42 pm

      It will manage the adrenal side of my illness and though I may still have serious health issues..it will make dramatic improvements. However I do have to be grateful for the life I do have. Thanks for taking your time to visit Angela x

  17. Malisha
    1st October 2015 / 12:41 pm

    I was diagnosed Feb 2013…..hope you get the pump…. heard it works great. I am doing ok on prednisone for now but think the pump would be better. Hopefully endos will start prescribing these soon.

    • 1st October 2015 / 6:39 pm

      Oh not long before me Malisha! It’s good to hear that your doing okay and yes i agree the pump is better in terms of better mimicing the circadian rhythm ad I do hope these will be available soon. Angela x

  18. 2nd October 2015 / 12:21 pm

    Oh my goodness Angela, that sounds so scary and how awful that you couldn’t get the medication that you need for emergencies. I have had similar issues with obtaining some of my daughter’s heart meds but not for that length of time, and thankfully I managed to obtain enough to keep going until they were back in stock. It is scary though when you’re close to running out and trying to work out what to do if you can’t obtain any more. Good luck with raising the funds for your adrenal pump x
    Louise recently posted…The Friday Focus 02/10/15My Profile

    • 2nd October 2015 / 12:56 pm

      Yes it’s not good when they run out of medication. It is still a problem but for now I managed to get a different medication in stock but still, it’s not a good things. Thanks for stopping by! Angela x

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