We all need to be heard for a little while.

jobbingmusician

Brilliant penguin (the 'I stand quietly' one). This is a great thread for learning new stuff!

Pyxis

7DW, that was so touching. :A

SingleSue

As a parent of two autistic children, I can relate to that poem extremely well.

Triggered a few bad memories from when they were young and the battles I had to go through (bad parent, oh they should be better now etc) but whilst the memories are painful, they also make me realise just how far we have come.

tea_lover

Another day, another huge binge. Am truly disgusted at myself. I just can't get this under control

Waves_and_Smiles

That was absolutely lovely SDW.

The letters to people who need them is also wonderful. Back on the old thread I said that I have a collection of lovely letters. My favourite psychiatrist Sterling called a case conference about me and one of the outcomes was he asked all 16 people involved to write me a positive letter. The idea being that when I was in psychosis that I had something physical that I could hold and read that spoke about how well I was doing. It worked really well and still does, the act of holding paper and reading that I can get through it really helps. His letter begins with block capitals at the start saying "YOU ARE NOT GOING MAD!"

My Psychiatry and Endocrinology appointments are over and relatively painless. My thyroid function has dropped again so we have increased medication. My consultant is going to chase up the bone aspiration appointment because I still have far too many white blood cells. We are still no closer to knowing why and have exhausted everything apart from looking at my bone marrow. It could simply be Addison's disease (which would mean I have the brittle kind (the adrenal levels change daily) but we need to make sure. He feels that some of my mental instability is as a result of my thyroid fluctuations, it will take 4 weeks for the latest dose to work so he has asked that I make a note of any mood changes as a result for my next appointment and will share the results with my psychiatrist.

Please sign up here for Addison's Disease 101 tutorial or skip if it's boring. There is no medical advice as this isn't allowed on the forum, just a general overview of what the condition means for me. There are other causes of Addison's disease but I cannot comment on those as they aren't relevant to me and I don't know much about them-

I have slightly high kidney results which is understandable with Addison's Disease. (Addison's Disease means I don't produce enough cortisol and lots of hormones are affected by that so I take steroid medication to supplement it. In my type my body thinks cortisol is an infection and destroys it. So we need to flood my body with artificial cortisol until my immune system is too overwhelmed to destroy all of it). So I must drink even more water and depending on what the next test shows in 3 months we may increase the steroid and/or introduce a potassium tablet. Since I have been put on diuretics I am losing an awful lot of salt which happens with Addison's anyway so that needs to be watched. We cannot reduce the diuretics due to the odd blood pressure thing so we need to work with it.

Because of my blood pressure I was told to stop using salt but now I am losing it too rapidly so we have settled for adding salt to cooking water but not directly onto food. This is a huge relief, I crave salt constantly and I miss it! Most people with Addison's do, I used to eat salt straight off of a spoon. Having said that, unstable Addison's disease can cause blood pressure problems in itself so it needs to be stabilised before we can get an accurate blood pressure reading, it is possible that I would need less tablets for the latter if the former can be controlled better. The same applies to my hypoglycaemia that could in itself be a result of unstable Addison's, it causes unstable insulin production. It also reacts badly to stress as adrenaline is a major problem and with me being psychotic that makes it hard to control, too. On top of all of that it could be the reason why I developed arthritis at 21. A lack of cortisol causes all kinds of problems because it stops other hormones working properly.

What all this means for me is my body constantly thinks it's sick and my hormones are constantly unbalanced. It is fighting cortisol all of the time so I get very physically tired and run down just like I would be if I really had an infection, although I don't really notice anymore because I am so used to it. I sort of presume everyone needs to sleep for 12 hours a day and gets tired and out of breath after 10 minutes of an activity like tidying up. It also means I am very susceptible to real infections and viruses because my immune system is already occupied. No one knows why my type of Addison's develops but fortunately it is rare. My mother also had it so there is an element of genetics involved in my case. It was why they could never stabilise her diabetes and thyroid problems and I was born with Hypoglycaemia and fluctuating blood pressure myself implying that I have had a degree of Addison's since birth.

My endocrinologist calls cortisol a base hormone, it is necessary for all of the other hormones to work effectively. There is little research into it because it is a rare condition and treatment in the form of supplements is already available. It adds risk to things like surgery (even having a tooth removed!), serious injury or heavy exercise, and extra artificial cortisol is needed at these times. Even a sudden shock can result in an Addison crisis which means cortisol is needed immediately. In a crisis I shake uncontrollably, my muscles cramp, I feel very cold but sweat a lot, I find it hard to breathe and I can faint quite quickly which can lead to my heart stopping. Luckily an injection of cortisol puts it right just as fast and it happens very rarely.

What we do know is it has an effect on anything that needs adrenaline and at these times levels of cortisol drop very fast thus throwing all of the other hormones out of balance. For example, if I wish to exercise my endocrinologist recommends yoga, something like sprinting or weights would put me in crisis. I do have epi-pens to inject myself with cortisol if a crisis happens but have only ever used them twice. I don't move much. When I had flu over Christmas and was being sick a lot I had to take extra cortisol because that also depletes it. Someone with Addison's benefits most from a very calm life where adrenaline stays stable (have I mentioned rampant psychosis and paranoia? It is kind of obvious why mine remains unstable).

So, we are trying to balance everything against each other as usual, I giggled because my endocrinologist literally scratched his head and looked puzzled. He said that only 8,000 people in the UK have Addison's disease at any one time and he has never seen a case where it is combined with Hashimoto's disease, stress-related mental illness and Lupus before but he is certain that somehow it is all related back to Addison's Disease. Errr, yay?

Despite all of this, it isn't that bad! It would affect me far more if I wanted to have an active lifestyle but as I am sat here with the laptop most of the time it only fluctuates due to my anxiety levels. If I wanted to leave the house more regularly, had a job (particularly a stressful and/or active one), or moved around more in general I would have to pay more attention to it. I don't often think about it and as I said I have had it for so long that I don't really notice the tiredness, muscle cramps and breathlessness on activity as being odd. It could be a lot worse.

The shorter version-My hormones are broken and my immune system keeps beating them up. Here endeth the lesson on Addison's disease. I hope that was of use to someone, writing it all down got it straight in my head at least and blocked the Bad Thoughts for an hour. If any of this sounds familiar do go to your GP. There are many conditions that have similar symptoms to Addison's so please don't self-diagnose from my post. Also, having Addison's disease may be different for other people, I can only speak about what it is like for me.

Now, where was I? My psychiatrist altered my medication dosage again. Now we are going to try 4 small doses every day. The medication isn't increased it is just split up. He did mention we could try adding the other very old anti-psychotic which is still available (as I have said my body reacts badly to the carrier chemicals in the modern ones. Right now I take Chlorpromazine and the other one is Haloperidol). The problem with introducing another old one is that I am then at a much higher risk of side effects which can be permanent with older medication even when you come off of it. He has left the decision up to me, it depends how I feel that I am coping with the psychotic thoughts. I am leaning towards leaving things as they are because the side effects from the old anti-psychotics are horrid if you develop them and there is little treatment to control them. So, I shall continue on as I am for now at least.

Thank you all for understanding how scared people coming into my home makes me feel. We need to tidy up today and get ready for another invasion tomorrow. I dread it, if it isn't bad enough with heads popping up outside windows they are coming in here now, too. I will get through it, not much choice really.

seven-day-weekend

SingleSue wrote: »

As a parent of two autistic children, I can relate to that poem extremely well.

Triggered a few bad memories from when they were young and the battles I had to go through (bad parent, oh they should be better now etc) but whilst the memories are painful, they also make me realise just how far we have come.

Same here, I have had similar experience

Pyxis

tea_lover wrote: »

Another day, another huge binge. Am truly disgusted at myself. I just can't get this under control

Oh Tea, I sooo understand! You won't believe what I packed away when I was ill, between Christmas and February, which was why I ballooned, and I just couldn't stop, the cravings were so great.

Even now I am back on track with my exercise and fast days, I am still teetering on the edge of succumbing to gluttony and even alcohol! Even though I really don't drink much these days.

Take today, which was supposed to be my second fast day of the week. I had a visit from the gas man to service my boiler. I too, get worked up at the thought of strange workmen coming into the house, and then he gave me potentially depressing news, which smacked of my Big Worry (complicated!). (The boiler's ok, it's something else). So after he went, I looked in the fridge and saw that some fish expired today. Fish is one of the use-by dates I won't compromise on, so I decided to eat it, and some cheese, which took me way over my 500 calories. So then, still feeling bad, I chomped a chocolate bunny someone had given me for Easter, and I'm not particularly fond of chocolate! Yet I ate it all! And I still feel depressed, and I'll have to have the fast day tomorrow now! :mad:

The funny thing with workmen is that, once I get to know them, and it's a job stretching over a few days, say, I get used to them; I get into the new routine, and when they finally finish, I almost miss them! There are exceptions of course, but I realised that it's the new routine that scares me, rather than the people themselves.

But for one-off things like the boiler service, I get very edgy, and like you, can't settle or get on with anything till they've been and gone.

WaS, it's different for you, because you've no idea when they're suddenly going to turn up, and you're not in control of the appointments or what work they're going to do. :A
Does your new landlady know of your illness? Do you think she'd be sympathetic if you explained everything?

Waves_and_Smiles

Aw, sorry you have a bad, Pyxis. big hugs to you and for tea, too.

I did consider mentioning to the landlady that I have an illness. It might help if I just mention that the autoimmune disorders cause me to react badly to stressful situations, I am reluctant to mention psychosis as I have seen people back slowly away in horror. I know that she needs to get these jobs done for her insurance validation but a little more notice and people turning up when they are supposed to and not 2 weeks later at random would help!

whitewing

I come on here to post and then don't really know what to say when I get here. I am perfectly alright, just a touch disappointed with some procedures that I would love to discuss but can't in case anyone recognises me.

I did win £25 on the premium bonds (after 18 years!) but couldn't get enthusiastic enough to tell DH.

Pyxis

Well, buy yourself a nice treat!

After 18years of waiting, you deserve that much!