Sunday, April 13, 2014

What to do When I'm Hurting

I recently wrote my wife a letter describing ways she could me when I am in a lot of pain. I thought it was perfect to post here, as it might be something that you could show a caregiver when they are struggling to find ways to help, when they are feeling helpless. Feel free to share, just credit me/link to my blog if you post elsewhere. Much love to you all.

To my dearest wife:

First, thank you for being such a wonderful wife. I am lucky to have you. I love you very, very much. I know this is trying and I know it’s a lot to handle. I appreciate all you are doing, all you have done, and all you will do. Here is a list of things that are helpful to me when I am in a lot of pain. Feel free to try any or all of these measures. All of these say to ask me, but if I am so bad off that I can’t answer, just do what feels right. Err on the side of more is better. Make me take the meds, use the wet heat, massage the area, etc.

  • Ask me if I have taken my breakthrough pain meds (feel free to check my phone app for Roxicodone, last taken).

  • Ask me if I have taken my midday Gabapentin.

  • Ask me if I have taken a muscle relaxer: Valium (daytime), Zanaflex aka tizanadine (evening), can add Flexeril in daytime if Valium isn’t enough.

  • Get me any meds I need and some water.

  • If the lights are on, turn them down (not off, unless I have a migraine). It’s more calming. Feel free to make the room more calming, candles and incense are great. They may help me to relax. (Ask before you do incense though, as it may be too much stimulation.)

  • Ask me if I want heat and/or ice. Heating pad can also do wet heat and that is a great option if I am in a lot of pain. Ask if I want wet or dry heat. If wet, get the wet felt, wet it, wring it out, then place it in heating pad sleeve. It will get the heat deeper, which is always a good thing in the flank and back areas. 

  • Ask me if I have run fluids and/or want to. Assist with that as needed.

  • Ask me if I want you to run a bath with Epsom salts. Assist as needed. (We should try to always keep salts on hand. I want to start using them more regularly.)

  • I will always say yes to massage. I like it hard, so go as hard as you can for as long as you are able. My legs and back/neck are my two preferred places. If I am rocking back and forth, try my legs first. My back/neck need it harder than my legs, so feel free to figure out how much kneading your hands can do and try to do my back and neck the hardest, if that makes sense. Maybe training in massage, like reading a book on it, in advance, would be helpful for the future. Or a class. Or just working your hands out so they get stronger (playing with silly putty is great for this). Also, use your body to provide the leverage and strength, not your hands. Lean into me. Push into me. Don’t rely on handstrength – you will get worn out way more quickly. If you aren’t physically or mentally in the mood to massage me, though, it is totally okay. You are always welcome to say no. Please don’t feel pressured. (Keep in mind, light touch irritates me more than it helps, so if you have done all you can do hard, don’t just touch my skin lightly --- especially if I am having fibro-flare symptoms.)

  • Touching me other than massage, if I am hurting badly, usually can be more hurtful than helpful. It isn’t that I don’t want your love, it is just that it adds to my pain, especially if I am having any skin pain. I get overstimulated and the touching makes things worse.

  • Normally, I don’t mind your company when I am hurting; in fact, it is usually very nice. Sometimes though, it overstimulates me when I am already having stimulation issues. So, it is best to ask. If I do want to have time alone, please don’t take it personally. I love you beyond measure. It just might be too much because then I focus on helping you help me, and I really just need to be focusing on relaxing. Just ask. I usually love you being with me, especially since you are gone all day and I deal with pain while you are away all alone.

  • Lastly, just double-check if there isn’t anything else that I need, and maybe see if I want something to help occupy my brain like my Nook or Law & Order on the laptop.

Thank you. Thank you a million times over. Thank you for marrying a person who needs your help more than most partners and requires you to be a caregiver and a wife. I am sorry I put you through all of this, but I don’t do it on purpose. I know you do what you do because you love me, and I appreciate it so very much. Thank you. Thank you for being so wonderful.

Love you always.
Xo
dani

4 comments:

Marie Owens said...

Thank you for for writing this. You beautifully put into words what I wish I could say to my Mum everyday.

Anonymous said...

Hi Dani,

I too was diagnosed with EDS Type III/Hypermobility. I sent your "My EDS Story" post to my husband and immediate family, because you are able to articulate what living with EDS is like. I would really like to network with others that are learning to navigate their lives with EDS; it can feel very isolating to be a "zebra". Are there any forums/groups that you would recommend? thank you! -Jordan Charlotte, NC

Böser Schmetterling said...

Hello my dear,
I found your Blog because of your Youtube Video and found it very interesting. I just wanted to let you know that I posted the link in my forum for craniocervical instability.
I am working hard on building a website and a forum for people with cervical instability. I have been suffering from a cervical instability of my whole cervical spine and since 4 weeks I know the reason for all this is an EDS type 3. So I am quite new in the EDS business :)
In Germany the doctors do not know much about EDS or cervical instabilities. So it took me very long to find that out. A doctor in Bethesda finally made the write diagnose. So I would love to see you in my forum or on my website. I tried to translate everything into english that we can work international.
Thanks for your inspiring story.
Best regards
Karina

Hannah Mitchell said...

Thank you for writing this. I am always feeling worse when my family look at me with that helpless look while waiting for me to tell them what to do. I think I will be making similar letters for my family so they can feel useful and not feel so helpless.