Just needed to be heard for a little while

Waves_and_Smiles

There is a very high chance that if you get referred to a sleep clinic that they would request a sleep diary so if you can start one it would be helpful. I also found it useful to record what I did before bed and what I felt and thought to see if there was any patterns. Only do what you can, though. Lack of sleep is debilitating so don't push yourself too hard. Sometimes pushing ourselves does more harm than good so take things at your own pace and try to at least relax your body when you can.

whitewing

Have you still got your sleep diary, WaS. Just thinking that it may be useful to people and lurkers to see a couple of the entries that you made in yours.

Waves_and_Smiles

Oh, good idea! I do have it, I shall hunt it down.

whitewing

Waves_and_Smiles wrote: »

Oh, good idea! I do have it, I shall hunt it down.

Lol, I forgot I was asking a hoarderish person!

lostinrates

Something I have been wondering about.

With endocrine issues these often have aspects than can impact on how people feel depending which hormones are confused. With you endocrine problems and lupus if they are poorly managed does this upset the mental health aspects WaS? There is a biochemistry level to both that must be hard to untangle at times? I note for example your menstrual cycle you mentioned had impact at one point. No different really, hormone fluctuating. I wonder if that aspects might be more stable for example, in male sufferers?

Waves_and_Smiles

It very much does, LIR. If my thyroid level drops which it is currently doing at least every 3 months the depression and psychosis are much worse. The same with Lupus. Even my psoriasis often flares at the same time as a psychotic episode so it seems all the autoimmune disorders link to my mental health. Also, if I don't have my thyroid tablets for a few days my mental health will become worse very quickly eventually leading to psychosis.

It is very hard for my Endocrinologist and Psychiatrist to juggle it, they don't want to increase medication unnecessarily if it is caused by something else but at times it is hard to tell what went out of balance first. Certainly when I ovulate I am more prone to psychosis, that has been proved for years. All in all it looks like one big biochemical mess with different conditions triggering each other. For example on the other side stress triggers my Lupus so a bad time with my mental health almost always causes a flare with that. But it could be a temporary flare (or might not be!) so they aren't sure whether to alter my medication or not. It is a juggling act for my doctors but thankfully they do talk to each other and try to keep on top of it the best that they can.

I also can't tell which is which a lot of the time. Several cause tiredness but that also happens when my mental health is bad so it is hard to pre-empt what might be about to go wrong. Before now we have just slightly increased all medication and hoped for the best and then gradually reduced one at a time and waited for something bad to happen.

There is indeed evidence that autoimmune disorders are easier to stabilise in men. Women have so many different changes happening that it makes it very hard to keep a control on them. Not only are the chemicals out of balance they are changing levels regularly, too.

lostinrates

Oh gosh, I hadn't taken in you have psoriasis too. That must be very difficult with no sunlight.

My DH has psoriasis. I've developed rosacea ( can one get rocacea with lupus sometimes? ) so we joke we're like a teen vampire/ fantasy novel, divided by that he must live in the sun while I am condemned to no sun!

Waves_and_Smiles

I have Rosacea! (I sounded strangely excited there). I take a daily antibiotic for it. It is indeed linked to Lupus and also to my eye problem. It is interesting having a face that shouldn't be exposed to sun and a scalp and body that needs to be! My psoriasis is a lot worse since I stopped going out and even worse since my Vitamin D level plummeted. I have cream and scalp treatment and occasional steroids for that, too. It is just another set of things for my doctors to juggle, they earn their money with me! At least they said that they find me interesting?

lostinrates

I cannot take the daily anti biotic, other health reasons, but on the two short mega doses I was on it responded amazingly well and so far I haven't had any blepharitis and only minor ocular roceacea and not much on my face really. Impressive as I've not been taking care of things much.

Waves_and_Smiles

That's wonderful LIR! It does respond very well to antibiotics, I have been taking them for it for 19 years. Mine does flare if I stop them but as long as I remember one daily my skin stays clear and unswollen. I really hope things continue so well for you!

Interestingly, when I was first diagnosed with it I was immediately tested for Lupus as I had the classic butterfly flare on my face. Four tests for Lupus came back clear for me over the years even though I had all of the symptoms, but the last test was positive (love how it is called positive). My consultant told me that in some people the blood test doesn't show it for a long time even though they have it, it seems that was the case with me which if true means I have likely had it for 19 years without diagnosis. That would account for the frequent infections then...