Tito Oye

I could list 100 things, but the first thing that came to mind is the stage where you’ve started to recover from a crisis but you’re not 100% better…maybe only 60%, and that stage of recovery can last forever. It’s very frustrating in my opinion.

I find that during these months my energy levels are more depleted, like as soon as the sky gets dark my body starts getting ready to rest. I think that especially during these times to find a balance between what your body wants and what you needs is essential, but definitely easier said than done.

Oooh I’m looking forward to the same thing too @michael-quadri!
This year I am also trying to make better and healthier decisions when it comes to my lifestyle and I’m also looking forward to seeing a positive difference caused by this.

Yes @virus, unfortunately there are times when the pain is so intense that no distraction is strong enough, and in those cases, sleep is the best option for me.

It’s good that @jordangirl & @enorris have things that work for you and people that can support when needed. I think when I am going through crisis what helps is when people already understand what I need, it saves me having to explain and it allows me to focus on getting better as quickly as possible.

@jordangirl what are mineral drips and what…[Read more]

It’s good that @jordangirl & @enorris have things that work for you and people that can support when needed. I think when I am going through crisis what helps is when people already understand what I need, it saves me having to explain and it allows me to focus on getting better as quickly as possible.

@jordangirl what are mineral drips and what…[Read more]

I am trying this year to be way more consistent with my eating schedule. I tend to miss breakfast also and eat much later than I should in all honesty. @virus  similar to you, I’d like to get more sleep during the week as I also get fatigued.

My best friend is definitely my hot water bottle. When I start to feel cold I grab my hot water bottle like I am preparing to go to war 😀

@virus Those are very essential items!!!

@viviane141 I think having an advocate is priceless, especially during the times when you’re not strong enough to fight for yourself.

I also feel very touched when I see people advocating on my behalf, even when they don’t completely understand what it is we go through. The fact that they try really warms my heart.

I agree @virus, if I need medication, please do what you can to help me get it, don’t be another obstacle!

I’ve recently started to learn how to drive which had been a challenge, to say the least! I definitely feel outside my comfort zone!!

Now that it is getting to the winter months, those of us with sickle cell have to be even more careful when it comes to travelling, especially by air.

One thing I do to ensure I am warm on a flight is to take an empty hot water bottle in my bag. I then ask a staff member to help fill it up.

The cold is something that I am very weary of and the cold is often a trigger for my sickle cell crises. Because of this, I have started to minimise the number of times I leave my house after a certain time of day unless it is essential.