Having the Answer to “What Can I Do to Help You?”

There are a lot of times someone with IBD might be laid up in bed because of a flare, recouping from surgery or a number of other reasons.

How many times have you heard the question “Is there anything I can do for you?” and didn’t know the answer?

I’ve got a few tips on how to handle situations that might be a tad uncomfortable, especially when you don’t know what to say. Sometimes when you don’t know what to say, you’re left with a feeling of guilt that you’re expected to have the answer to that question! Sometimes you just don’t know.

Many of us don’t always talk about how our illness affects us. Many times, ignorance can be bliss – if we ignore the symptoms, maybe they’re not really there, right?? Wrong. There will come a time when you cannot ignore those symptoms anymore and you must seek help from your gastroenterologist.

Just like seeking help from any of your care providers, it’s important to seek and accept the help of others.

And let’s get one thing clear about this before I go on – I am the biggest hypocrite when it comes to this, because I don’t let people help me enough. My usual answer is  “No, I’ll be alright, but thanks.” Within the last few years, I can tell when people are being sincere and when people are just trying to get out of an uncomfortable situation. I can read that pretty well. But the people who are sincere, really care and want to help – we should let them.

Not a lot of caregivers truly understand the depths of what ulcerative colitis or Crohn’s disease can do to a person’s body, emotions or mental state. I’ve not given up on trying to educate them, but when you’re ill and you barely have the energy to get words out, it takes a lot of patience. When you’re sick, you lack patience.

Like I said, I don’t accept help in the way I should because I’m a bit hard-headed and like to deal with my disease, along with its symptoms, privately. I talk about them a lot when I write, but when it comes to personal conversations, I never want to be the person that complains, whines or harps on their disease. I want to be seen for me and putting my guard down and accepting help can be hard when you have a lot of pride and are very independent.

My loved ones and support team have done some pretty special things for me in the past.

Not all people know what to do when a loved one is ill and they shouldn’t be expected to know. There comes a certain point in your disease where you have to make an effort to let others know how they can support you. This could be at work, for instance, asking for work that might be a little easier for you on days you’re flaring. If your coworkers know there’s something going on, they may want to help but they may not be sure what’s appropriate to ask, suggest or offer. Don’t be offended. I’ve been blessed with great coworkers, but they also know that I like to keep my personal life separate from work.

This is one of the reasons I began writing my blog, so that others could use this as a resource to know “what to do” vs. “what not to do.” I’ve written several blogs on “what TO say to someone who has IBD” instead of the typical “What not to say to someone with Crohn’s or colitis.” I feel like this has helped set some boundaries, and when someone brings it up, I keep conversation very short and tell them we can talk at the end of the day. I don’t want them to feel as if I’ve brushed them off, but there is also a place and a time for sensitive things.

My family has also done some pretty stellar things for me.

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My mom has gone out of her way multiple times when I’m ill to come over, tell me to go lay down and clean my entire house from top to bottom. Everyone going through a serious illness can attest to how dirty and collected things can get when you’re sick. My mother has been a saint during those times and has made sure my environment is as clean and sanitary as possible when I have not had the strength or ability to do so.

Another thing my mom has offered to do in the past is shampoo my hair. Because my arthritis gets so bad (even at the moment), there are times my hands become so swollen and painful that the thought of taking a shower makes me cry. I know that I am unable to wash my hair by myself, so she has done it multiple times for me. These little things become very big things when offered to people who are going through something physically traumatic.

And then there are friends.

How the heck do you explain to someone you can’t do something because you’re not feeling well?

How do you say no when you could be risking that friendship? Will they stop calling? Checking in? I suggest explaining through a text or an email that sometimes, when you’re at your weakest, it’s hard for you to be seen in that state. Just. Be. Honest. It truly goes a long way and the people that are strong and want to stay – will.

I’ve had great friends just send a text telling me “I’m just going to stop over and drop something off – I won’t stay, I want you to rest! And I won’t take no for an answer!” It is SO good to see those people, even for a split second. To know that they understand what I need, because I’ve been honest with them by setting boundaries makes me feel like a better friend than saying nothing at all. My friends and loved ones begin to understand that “Not today” doesn’t mean “Never” as long as I give them enough line for some slack. Even though my patience and energy may be thin, I have to recognize the importance of being honest and verbally giving them reasons why you need lines drawn in the sand sometimes when you’re not feeling well.

I have to thank my friends who suggested (very strongly) that I make an Amazon Wishlist when I became unemployed and couldn’t afford much of anything while waiting on assistance from the Government short-term. Without them, I’m not sure I’d be where I am and I am so grateful that it was strongly suggested I make a list, because people want to help! That was hard – putting my pride aside and letting people know what I needed in order to get by.

Really what you need to let others know is your definition of “support.”

What does it mean for you? Have kids? If someone texts you and offers to bring something by, perhaps tell them, “I’m not feeling up to it yet, but since you offered, do you mind taking my child to the store with you so it’s a bit quieter around here?” Or maybe you have a dog that might need walking. People want to help. It’s just up to us to accept it.

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Read the FULL article here: Having the Answer to “What Can I Do to Help You?”

2018 Goals for Self-Care

It’s important to be able to recognize when you need to breathe, take a moment, perhaps step back and get a clearer picture of things and figuratively hit “reset” when you can.

People don’t realize how important self-care can be, especially if they don’t know what self-care actually is. Sure, a new purse is a nice reward, but after you’ve been through something serious like a surgery or are going through something very difficult like a bad IBD flare, it’s helpful to recognize when it’s appropriate to stop everything and provide self-care.

Here are a few things I’ve compiled that help me complete and follow through with self-care:

Baths

Most IBD-ers have taken a sitz bath at some point in their time being a diagnosed patient. There are times that I have complications physically and I cannot bathe or am not allowed to, such as when fistulas are present. It can be painful and truthfully, exhausting. Who knew a bath could be exhausting? Sometimes I have trouble getting in, getting out and I am exhausted once I am in, when I’m able to use the bath. I usually soak at least once or twice a day.

To help with my mental health, instead of thinking of a sitz or any bath as a task, bring one thing into the bathroom that will be helpful to motivate you to get you in. Maybe it’s a bluetooth shower radio, maybe it’s a great smelling candle, incense or some bath products like bath bombs or soaking salts. (Please be careful or don’t use at all when you have external wounds like fistulas). For me, when I’m just doing a quick soak, I usually treat myself to a nice cup of tea. (I’ll follow up with this later).

Movies

I go to the movies at least once a year by myself for quiet time. Usually around the New Year and usually once in summer. I go by myself, get a big soda… and have to skip the popcorn, myself. I grab a nice thick sweatshirt, sweatpants and head to the movies not caring who I see; I’m there to spend time with myself and enjoy a flick and kick my legs up and enjoy a nearly empty theatre! This is not to say that going with a friend or group of friends is not also providing self-care.

Self-care is truly whatever you define it as, as long as it has a positive effect on your overall mental health, which is crucial living with any chronic illness.

Collecting

Anyone who knows me well has likely seen part of my mug collection. I love to collect big mugs and display them. I love collecting big mugs, sometimes with funny sayings on them. I also love to give mugs away. Amazon.com gets me every time with “My Amazon” because they clearly get my love for mugs. I also collect maps and globes – there probably isn’t a room in my house without those things. If I’m surrounded in happiness, acceptance and tolerance of my disease is very relative to that.

Tea Pots & Tea Varieties

I have recently within the last year acquired a great love for tea, teapots and the like. Since coffee does not agree with my IBD, I’ve tried warm tea, since it seems that even hot water will bother me. One self-care item, I actually set a goal for myself to save up some money for a tea/beverage cart so I can display my beautiful collection. At the end of a hard, exhausting day, I truly look forward to grabbing my kettle, brewing a batch of tea and mixing some honey and lemon in. Some people spoil themselves with a glass of wine, I spoil myself with tea add-ons and trying different types of tea!

Journaling/Bullet Journaling

I know journaling sounds a lot like a diary to many people, but that couldn’t be farther from the truth. There are many different planners and journals that help you get started with your goals, as well as following up with them and making sure they are achieved. I work several part-time jobs that definitely make me a little crazy in different moments if I’m at the wrong place at the wrong time.

My handy planner has been a life-saver for me, as well as my appointment keeper. It keeps me on schedule with deadlines, events and the planners I’ve personally used have always had some touch of goal-setting involved within the pages themselves. There are many online to pick from; browsing on Amazon may help you find one, may lead you to another website that may have one for you or you can always go to your closest retail store. (The ones I’m currently using right now are actually from Target.)

What do you define as self-care and how do you make sure that you implement it into your daily life when you find yourself stressed, tired and especially when you’re in a flare?

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See entire article here: 2018 Goals for Self-Care – CrohnsDisease.com

When I Distance Myself

Recently, I found myself around other advocates for an annual summit we do all together. When it came time to get ready for the event, I knew I had to start changing things up, because I had been “in hiding” for some time – not as active within the community, finding it hard to relate to others with certain subjects, and when it came down to it, I needed a break from “being sick.” Now, when I say “taking a break,” that doesn’t mean I went into remission or my symptoms finally went away because I told myself I needed to step away from a few things.

It means every so often, I hide in my shell, because I am in denial of things going on.

I’ve had this disease for 13 years now, and as much as I talk about acceptance, I know that I should talk about the subject that is taboo to us – denial.

Typically, I’m not as social as I used to be. Crohn’s has taken away many friendships over the years and as much as I’d like to blame everything on that, it’s just as much me distancing myself when I feel people don’t understand me – both those with and without IBD. But when you are in the public eye advocating for others and others turn to you for help nearly every day, there is a certain weight that we don’t talk about that can affect us.

I’ve had many sleepless nights in the past few years due to being woken up with someone dealing with an IBD crisis and if I’m unable to help to a certain extent, that weight does not lift quickly. Sometimes that weight, in addition to my own issues, becomes too much to bear and I acknowledge that I need to slip away for some time, to deal with my own self-care, to make sure my own mental health doesn’t suffer.

I want to take away everyone else’s pain and sometimes, that causes my own pain.

Sometimes, unannounced, I pull away from others in my own community, not to intentionally hurt them, but because I realize that my own coping mechanisms just aren’t enough to help others in ways they need it.  I need to put myself first. That has been extremely hard for me to accept. I find myself being a hypocrite a lot; I advocate for everyone else to speak up for themselves, manage their self-care as best as possible and to seek help when needed. But issues arise when I don’t take that time to talk to my mental health provider, let friends I need a break from “this sick life” and just do my own thing for a while – a means of decompressing.

That is the downside to being a very active blogger and community member within our large chronic illness community. We need to realize that many of the people we go to for help, whether it’s every few months, once a year or quite often, are people first; they’re also patients dealing with a lot on their plates. Giving others that piece of understanding by telling them you just need some space for a while might be the best thing to do – whether it’s just your personal Facebook/social media site or maybe a group you regularly attend with friends outside of the illness community.  Taking the first step to acknowledge you need a break for your own self-care is important and shows how hard managing illness can be.

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See the entire article at: When I Distance Myself – CrohnsDisease.com

What Should I Ask OF My Care Team

Diagnosis of IBD can be incredibly difficult. Without an education of more than basic Human Anatomy & Physiology in most college courses, many people don’t know how detailed the human digestive tract really is. When first researching IBD, you’ll quickly realize how confusing some articles can be, what false information (and false hope) people want to feed you. So, it can be confusing what you even want to ask on your next few visits with your GI/care team.

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Here are some helpful hints:

Ask where your disease is located and has been active in the past.

If there is active inflammation, ask where that location is and what can be done about it. Ask what may happen if you decide to not go through with treatment – this is important to hear from a medical expert on IBD, as withholding treatment may permanently affect your GI tract, meaning said damage can be irreversible.

The first few years of my diagnosis, I was thrown back from one diagnosis to another – 2 doctors even went as far as to mistakenly say I had both CD and UC, which is physically impossible. Because of the conflicting answers I got, I began a journey of trying to educate myself, leading to what I would soon acknowledge as advocacy.

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Ask your care team to make a separate appointment with you when things with your disease change – good or bad

If they have anatomy models, ask them to show you where things are located according to your case and ask them politely to be thorough. When they know how seriously you take this information and how invested in educating yourself with the correct answers, they will likely take the time to educate you and provide you with some resources to take home.

Try asking:

  • Where is my disease located?
  • What are the risks of my disease going untreated?
  • What are potential side-effects to my new prescribed treatment?
  • Where has my disease been seen since my last scope & since my very first scope? (How has my IBD progressed Has it progressed?

It’s not likely your GI or Nurse will necessarily refer you to a certain online support group, such as those on Facebook, but seriously consider what they do recommend. When you want answers, you want them to be as correct as possible and understand the facts in a simple way that doesn’t confuse you. Dealing with the GI tract can be completely overwhelming, based on the number of organs it can affect.

Ask your care team if there are support groups in your area.

The more you get to know this disease, the more you will see how different everyone’s IBD truly is. IBD is like a fingerprint – each is unique to the person and not all symptoms, complications and surgeries are the same. Not into support groups? Ask your GI or your Nurse if they know of any different kinds of support that may work better for you – maybe they will mention a place to go for information. Maybe they will know of a certain advocate in your area you can talk with and help you get you to where you need to be in terms of advocating for yourself and getting to know your body. Often times, when talking to someone else with IBD, they will give you a few ideas to ask your care team when you see them next!

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Read the FULL article here: What Should I Ask OF My Care Team on CrohnsDisease.com