One wolf to another

I got a message today from my old neighbour, telling me that her sister is being tested for the dreaded Lupus. She asked me for advice that she could pass on to her.
I really wish I had, had someone to turn to when I was told I had it.
Ok I had google but knew that could be dangerous. Sometimes too much information can be more than scary.
For a long time I put off researching because basically I was frightened and in all honesty I really didn’t want to know.
There really is a fine line between knowing too much and not knowing enough.
I finally gave in and researched a little. And I was right it’s all a bit bloody scary. Now if something crops up I will have a quick look but only enough to know what’s going on in my body without scaring the life out of myself.

So without going into any medical talk, (If you know me you’ll know I don’t do all those long medical terms well, why they have to explain things so only superman could understand, I don’t know. Plain simple English will suit many just fine, thanks.) here is my little piece of advice from one wolf to another.

My advice is to rest when you need to but not to give into it. (I have to fight to get up in the mornings because if I don’t it has beaten me.)

A hobby that you can do at home is a great idea as it has got me through some really dark days.

The most important thing is to write everything down, every question, feeling, symptom, etc, etc so that when you see your consultant you don’t forget anything. They are very good at trying to fog you off because they are more interested in clearing the waiting room.

One of your biggest struggle will be the people around you will not understanding what you are going through and expecting you to be able to keep up and do what others expect from you or what you were once able to do at speed. On bad days you simply can’t keep up, I’m sorry but you can’t.
Remember it’s your body’s way of telling you to slow down and rest.

Your life will change more than anyone will notice but it’s the depression that will come with it, that I would keep an eye on.
Having the simplest tasks taken away from you like cleaning your home is so hard mentally and it will take at least 3 times longer to do things. It’s the small things that will hurt your mind and make you depressed.
It’s a cruel illness but as long as your mind is strong and you have a good support network around you that understand that just because you don’t look sick, that you really are.
People can be the cruelest.

I would do your research so you can understand the battles that you may face but too much research is also a bad thing because it’s scary, really scary.

If you are a smoker, than try to give up. I found the best way was to use a vape. It may not make a difference but my consultant kept on and on until I craved in and gave up.

Really though, the best advice I can give is to listen to your body and rest when you feel you need it.

Also a huge one is DO NOT FORGET your meds. Withdrawal especially from morphine is a bitch, I know this too well.
Set alarms, reminders on you phone or any other gadgets you have. My trusty old Fitbit is a godsend for my reminders.

If you are in a state or country that cannabis oil is legal, then research that because boy that stuff from what I’ve heard is a life saver.
There are loads of videos on YouTube showing it eating away at cancer cells. It’s proven to work for so many medical conditions but it’s the same old, same old, pharmaceutical industry that won’t play ball because they will lose too much money. Wrong so very wrong. 😡
But from the stories I’ve read, it’s worth a try.

That’s about all I can think of for the minute. I hope it helps.

One last thing, this article is pretty on the ball and worth a read or a share to help yourself and others begin to understand.

20 Ways Lupus Affects the Body

Stay safe, stay happy and rest.
Toodaloo 😀


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