My Life With Adrenal Insufficiency

Progress With My London Endocrinologist

Progress With My London Endocrinologist

It’s been almost a year since I first came to London to see a specialist. My life has changed quite a lot in those 12 months. When I first saw the Endocrinologist here in London, I was so unwell. I had been to hospital around 22 times with many hospital stays.

I was at the time barely walking. I had walking sticks and a wheelchair. I could not make it around a supermarket or walk from the carpark to the park. I could not do many things. I was mainly bed bound and in the mornings my blood pressure would drop so low my body would become so unwell and I could not stand in the mornings without collapsing.

Back when I was on steroid medication it would take hours for the tablets to kick in and then they would drop out of my system so fast i’d be back to square one. The spikes of high cortisol, low cortisol gave me chronic pain and it was debilitating.

Now one year on and one year of being on circadian release medication I am still unwell but things are much better. I still stay home most of the time but I can get around the home. I don’t need a wheelchair for my hospital appointments. With careful planning and sufficient rest I can walk down the corridors myself.

My pain is no longer constant. It comes when I get low in cortisol and is a tell tale sign for me that I need more medication, whereas before I was constantly in pain so unable to know when things were getting worse.

I guess one would say my Adrenal Insufficiency is now stable and has been for almost a year. It has taken time to get used to a pump. I still have issues from time to time with the needle sites becoming infected and that of course affects my Adrenal insufficiency but the number of times that happens is quite rare.

I am able to increase my medication when I need to and give myself an emergency bolus of medication when something “stressful” happens. For example, I almost chopped my finger off with a knife when cutting sweet potato. I sliced through my nail and the nail bed and it hurt like crazy. I felt myself going into shock and my husband got my pump and gave me extra medication straight away. It took an hour or two of resting and I was okay. Had that happened in the past, I would have had to take a tablet which would have taken an hour to kick in and in the meantime I could have ended up in hospital.

My adrenal Insufficiency is much better managed now. I still suffer from chronic exhaustion and it’s really hard for me daily but I am improved from where I was and for that I am grateful.

I talked to my specialist and we agreed I have a good understanding of my health and I can manage things each day as and when I need to. I am being discharged and sent back to my NHS team but will be remaining on my pump. I will just have to be seen every 6 months by the local endocrine team. I still have to pay for my own medication/pump supplies which is around £130 a month as I have been unable to get this approved on the NHS.

So I have no more private doctor fees to save for in the coming months and no medical trips to London. I will only come back if my health takes a turn for the worse but it’s been much better for a year and managed and I just need to learn to live as a mother and wife with with limitations.

I’ve got the best treatment I can. That took me almost 4 years to achieve. I’m also getting treatment for my Iron problems on the NHS (which is good) and I am finally getting all I need to be my best self given my chronic health conditions.

So today my hubby dropped me at the train station in Lancashire. I took a train to London. I coped most of the way. I started to feel exhausted and tired after about 2 hours and so when I got to Euston station, I walked to the taxi stand and caught a taxi to my specialist. It cost £8. I then caught a taxi back to the YHA hostel which was another £8. I then checked in and went to bed. I was done in!

I guess in time I may be able to do more. I hope so. If not at least I can travel a one way journey on my own. I could not return home on the same day. It would be too much for my body. The YHA room was only £20 as I booked way in advance and I am sharing with others.

The hostel I stay at is lovely and clean, there is nice bedding and free wifi which is a bonus when your a blogger. I like it and it is now my go to place whenever I do come to London.

I am happy I just have to manage my health now. The fight to get the pump, my fight I have been fighting is over. I have this medication and now I just have to find a way to cover the medication/pump supply costs each month.

I feel a huge sense of relief. I am grateful I found a doctor who listened and helped me and now I am moving on to the next chapter in my life, in my family’s life. Learning to live like this! It is a learning curve. I guess I have to balance, managing this condition with parenting and blogging and earning the money to fund my medication.

I can do this. I have come this far and nothing will stop me from progressing further.

Angela x

 

25 Comments

  1. Endocrine issues really need to get more publicity. I know they can be so utterly exhausting and debilitating but hardly anyone knows about them. I’m glad you found a regimen that’s working for you 🙂

  2. My friend has adrenal sufficiency and she is constantly in and out of hospital. She also has a pacemaker, I wonder if she would be eligible for the pump do you think? I know you are still really unwell but I am happy that you have come so far. Hopefully when you get a little better we might be able to meet would be really nice to see you! xx

  3. I can relate to so much of this. I am also under an endocrinologist but am still awaiting a diagnosis. I was tested for Addison’s but came back negative even though my adrenal function is very low. I’m glad you are feeling improvement.

  4. Way to go Angela, such great news! My goodness, think how far you’ve come in just a year’s time. It’s really remarkable. Plus, it sounds like the things you’re doing to improve will be beneficial long term. Certainly there are still challenges ahead, but make a note to come back and read this post a year from now. I bet you’ll be surprised at how far you’ve come (again!) x

  5. This is so heartening to read! Giving you a virtual high five. Such positive progress, well done. I remember when I first got to know you the long and frequent hospital stays. You’ve stayed so positive and persistent.
    We’ve stayed in a YHA before in the Lake District, I was really impressed and it worked out as really good value for 5 of us.

  6. I have PTSD and depression. A friend of mine has POTS, and shares some similar symptoms of you. We are all fighting something or other. I wish you the best on your journey to recovery.

  7. Angela, I am rooting for you as you make incremental progress every day. You inspire me by your effort to move forward with life daily…

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