chronic illnessholidays

Surviving The Holidays With Chronic Illness

Our first guest poster this week is Ali and she is going to share tips on how to beating the stress and surviving the holidays with chronic illness and still having your sanity at New Years!

So the holidays are a happy time of year!  All the advertising tells me so.  Yet  it is usually with some nervousness that I approach the holidays.  As a spoonie the holidays can represent a chance to collapse and recharge which I like the sound of.  Having said that, it doesn’t come without its stresses!  For non spoonies it’s stressful.  I actually think my endo does me some favours at this time of year because it is a constant reminder to get organised and get happy.  I know that holiday stress won’t be a good thing for me so here are a few tips that I have found work well for me over the years that aid in surviving the holidays with chronic illness and in staying focused on having my share of the fun!

Start early

I buy presents for people when I see them in the shop, all year round.  I have a bag I keep in the spare bedroom wardrobe that is full of gifts that I have bought on the spot.  I often forget what I have bought. Getting the bag out in November is always fun as I remember where I’ve been and what I’ve bought for who.  It means I avoid crowded panicky shops which isn’t something I like or likes me.  Online shopping is also a revolution for topping up.  Letting other people do the work for you is a great help!  Now, who will want the wicker christmas reindeer I picked up in the post Christmas sale for 50p each…..did I say this way of shopping keeps the costs down too!

Ask for help

Cooking.  Not my forte at the best of times and sometimes thinking I have to do a certain thing and to a certain standard fills me with dread.  So, if I have the budget I buy it in!  Loads of shops here in the UK do a christmas service.  If I don’t have the budget then friends and family bring a plate. It’s a reminder they are all happy to see me well and happy, and would rather bring a vol au vent or two to keep it that way! It’s good for everyone to be involved too and there is a lot of fun to be had when you realise your Aunty Jean has a penchant for gluten free brownies you never knew about!

Have a bolt hole

Staying at other people’s houses can be a strain.  I always do better when I know I have a bolt hole.  So I plan ahead.  How long am I saying I will stay for? Where will I stay?  Just knowing there is a room I can head to for half an hour helps, even if I don’t end up using it.  If there isn’t a bolt hole?  I try and create one.  If there is budget available then I make it a treat and stay somewhere relaxing.  If I don’t have a budget I plan my stay and if there are games I don’t want to join in or I feel tired, I help out in the kitchen, or go for a walk to get the downtime I need.

Enjoy it

My brother jokes with me about the fact I always cry at Christmas.  It’s true I do! Sometimes because I am so tired, the break means I can fully relax and crying is part of the wind down.  Sometimes it’s the chance to step back and be grateful for everything I have in my life which makes me cry too!  My advice?  Let the tears roll! Holidays are a time for being with people you love and who love you.  Remembering that and being open to having their love and support means just being you is always enough.

Happy holidays!

Ali Germain lives in the UK and is a coach and facilitator.  Ali was diagnosed with Endometriosis in 1997 and has been taking a creative approach to life ever since. Connect with Ali on Twitter.

chronic illness

Guest Health Activist: Meet Bola!

For day 15 of the HAWMC, WeGo Health paired up participants to guests on each other’s blogs! I was very excited when I saw this prompt! I love meeting other bloggers and giving them a chance to share their story and teach us a thing or two about keeping hope in spite of illness here at A New Kind of Normal! I was paired up with Bola who blogs over at RealityNibs.com! You can also find her on Twitter, LinkedIn, and Facebook! Please give her a warm welcome and be sure to check out her blog! 

 

Last year at the end of the 2012 Blog Challenge, I told Wego Health that it would be nice to have a prompt which required each Health Activist to interact with other participants in some way. So, when I had the option of doing just that this year, I jumped at the opportunity. I even requested to be paired with a blogger who has fibromyalgia!

My name is Bola and I am on the verge of recovery from Chronic Fatigue Syndrome. CFS and Fibromyalgia are different manifestations of the same underlying condition (hypothalamic dysfunction) so I wanted to be paired with someone who was experiencing the other end of CFS/FMS. In addition to having this condition in common with Jamee, my situation was triggered by surgery for fibroid tumors which tend to occur for the same reasons as endometriosis and sometimes even occur together.
I really, really don’t like the fact that I’ve been unwell for eight years. But, facing this has brought many things into my life that I wouldn’t give up:
1. My intuition as well as my daily sense of my spiritual connection have been turned way up.
2. Despite my longstanding commitment to my emotional health, there are certain things I would probably have left under the rug if my health situation hadn’t made the stakes higher e.g. certain truths about my childhood.
3. Blogging!
I grew up in Britain and Nigeria then settled in the San Francisco Bay Area where I’ve had a marketing career in Silicon Valley. Unlike Jamee, I am single and I am looking forward to building a family at a level that I would never have known how to do before the earthquake that CFS brought into my life. Actually, I’m inspired by the way that Jamee has paid attention to her family life despite her health challenges.
I literally don’t know which direction I’m going to take tomorrow and I find the uncertainty challenging. But even as everything I expected to lean on has fallen away, love has come into my life in all sorts of stunning, unexpected ways. I’ve come to the conclusion that John Lennon really was right when he sang about love being all we need.
Thank you very much for having me here on A New Kind of Normal!
Thank you for sharing your story with us Bola! Be sure to check out her blog RealityNibs today where I will be sharing about my journey with endometriosis!

 

chronic illnessmarriage

Chronic Illness & Marriage: The Importance of Communication

I am so glad to be introducing you to our first guest writer of the series, Rachel! We were able to meet through the wonderful world of Twitter and I am so glad that our paths were able to cross! She is a fabulous person and a wonderful supporter! Be sure to visit her blog and say hello after reading today’s post!

First off, let me introduce myself. My name is Rachel. I have been married to my wonderful husband for close to four and a half years. I have Crohn’s Disease. I was diagnosed when I was seventeen. I am now twenty-four. My husband and I are also dealing with infertility. You can read my blog at www.rachelsgettingthere.com . I mostly blog about infertility, but this post isn’t about my infertility. It is about the importance of healthy communication in my marriage, specifically as it pertains to my chronic illness.
As I said, I was diagnosed at seventeen, so my husband knew what he was getting himself into when he married me. When we first started dating, he researched Crohn’s Disease and read everything he could find about the treatments and the prognosis. I think that him knowing about my illness when we married was definitely a plus because he sort of knew what to expect.
We talked about a lot of things before we got married. We set rules for communication. Communication has always been very important in our relationship. We have a policy in our marriage that we call ‘The No Ugliness Policy.’ It applies to all areas of our marriage. The No Ugliness Policy is an agreement not to say or do anything intentionally hurtful during any disagreement, argument, or discussion. If one of us breaks the policy we apologize immediately. You should never set out to hurt the person that you love. With Crohn’s, like all other areas of our marriage, we listen to each other and we keep it kind and constructive.
My husband was raised in a household where you didn’t go to the doctor unless something was bleeding profusely and/or was life threatening. If it wasn’t going to kill you, you had to suck it up and go on with your day. My husband is still that way. He once went on a business trip while sick with pneumonia! Obviously, with a chronic illness ‘sucking it up’ just doesn’t work all of the time. Sometimes I have to rest to avoid getting sicker. If I am in an active flare I have no choice but to rest. If I start having symptoms of a flare I have to go to the doctor immediately before it gets bad. It took my husband a while to get used to this. We had to talk about the importance of preventative care (rest, stress reduction, regular doctors appointments), we had to weigh the benefits and risks of all of my treatment options, and at times we have had to make decisions that were financially hard on us because of my health.
The secret to communication isn’t really a secret at all. You have to listen to your partner as much as you talk. It sounds simple, but it isn’t. Listening means keeping your mind open to the possibility that you might be wrong. You have to make compromises. For example, my husband’s mother lives very far from us. A few years ago she was going to be just one state over visiting his brother a couple of weeks after I got out of the hospital due to a flare-up. I felt terrible, but my husband doesn’t get to see his mom that often. It would have been selfish of me to not go with him to see his mom. It was hard and I crashed the next day, but I went. My husband has also had to adjust to the fact that when we do something that is physically taxing for me (like a trip or even family get-togethers) I have to crash afterward. Through communication he has learned that chronic pain is exhausting and I can’t just push through it all the time.
My husband is a professional fixer. He is a process improvement engineer to be exact. He has had to learn that no matter how much he wants to, he can’t fix my Crohn’s Disease. I’ve had to learn that he is going to try to fix it for me anyway. It’s his nature. It’s his way of showing that he loves me, but I wouldn’t know that if we didn’t communicate about it. If I didn’t know why he tries so hard to ‘fix’ me I would think that he was angry at me, when he is actually just angry at an illness that he can’t fix for me.
When one spouse has a chronic illness it definitely complicates a marriage, but it doesn’t have to make it worse. It can make it better. Being completely open with my husband about how I’m feeling has at times been uncomfortable for me, but the results have been so worth it. I get mad sometimes that I have to deal with Crohn’s disease while all the other people my age are so healthy. My husband just holds me and lets me cry when I’m mad. He has helped me make important decisions about my treatment when I’ve been too upset to really make the best decision myself. He truly is my partner. I have Crohn’s, but in a way, so does he. I’ve got to say, I sure am glad that I get to face it with an ally who loves me and supports me. I wouldn’t have that if we weren’t so open and honest about our thoughts and feelings.