A letter to a Loved One when I'm Flaring

Dear Loved One,

Being a loved one of a spoonie is very challenging, I understand this. I see you struggle with watching me me pain, I see you mourning the loss of who I used to be, and I see you struggle with knowing how best to help me in such a helpless situation.

I know for the most part you feel lost in how to deal with my illnesses, that coping emotionally is a battle as you don't know who to talk to about it all. I want you to know this isn't lost on me and that I see your heart, and we see how this is affecting you.

Watching a loved one being sick is hard, and then a flare comes and the battle gets harder. You probably know some of the things that I feel or think during a flare, or you may not. I wanted to share with you why I act a certain way during a flare and how you can best help me during this time.

• Ask me if I am ok. This seems simple and even silly to remind you, but sometimes having someone acknowledge that you aren't yourself makes a difference. I may not want to talk about it but asking if I am ok may open up a conversation with how I am feeling. Flares are emotionally upsetting because 

Check I have the essentials.  Check I have water, pain medication, snacks/food, distraction tools, a comfortable bed etc. 

Cook for me. The last thing on my mind when I am flaring is eating, let alone cooking. It seems like climbing up a mountain with a giant boulder on my back. Not having to worry about preparing a meal is a huge relief that I appreciate more then you could imagine. 

• Let me be. Being in pain is exhausting, and when I am flaring it is harder again. Carrying on a conversation during a flare is challenging- it takes a lot of concentration on listening and engaging. If I am being short with you or angry, it's likely its nothing to do with you and more so that I need some alone time. Flare time equals rest time. 
• Ask if I need anything.  Being a spoonie comes with an awful lot of guilt. I know I don't like to ask for help or for my loved ones to do things for me. Sometimes having someone ask to help is easier then me asking. I don't ever want to feel like a burden so having you ask shows me you want to help.
• If I'm sleeping, let me sleep. You may notice that I sleep, nap or rest a lot more during a flare. It's really important that I get that extra rest. Being woken up can in fact cause me a lot more physical pain then waking up naturally, so I really appreciate being able to rest in quiet during a flare.
• Run errands for me. The thought of getting out of bed, let alone getting ready and leaving the house overwhelms me during a flare. Life still goes on whilst I flare, so having you do errands like getting some groceries or getting a script is super helpful whilst I am stuck in bed. 

If you are a loved one of a spoonie and you've read this I want to say thank you. It means the world to us spoonies when our support system is open to ways in helping us. We appreciate all that you do and really do notice. We might not say thank you enough, or at all, but it means the world to us you care. 

Gentle hugs,

Bridget