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Feeling Ostomistic
Friday, January 19 2018

I had wanted to write about this topic so many times last year, but each time I feared if I did it could somehow come across that I am some angry hermit who doesn't like visitors. 

I don't claim to talk on behalf of all the people who are chronically or terminally sick, I simply am sharing mine (and my husband's) views of how we feel when you have surprise visits. Sometimes surprise or short noticed visits are difficult and stressful, you mightn't realise but there are reasons that make surprise visits difficult.

It could be very easy for you and your loved one who is sick to know how you can better support them and what things or actions don't help them. Finding how they feel about their needs or issues and how you can better help could be a starting point so you both can understand.

It is hard when you're chronically (and also in my case) terminally sick and trying to navigate the waters of keeping up appearances, being social and people visiting often surprised and unnanounced. I know people care and they decide as a last minute thing that they wanted to visit me for the day but don't bother telling me as "it is fun to surprise you" thinking it will make me feel great about myself having visitors, but they don't realise surprise visits cause me a lot of stress and anxiety which I explain below.

Don't get me wrong, I like when people visit but only if 2 conditions are met:
#1. I have notice and #2. Providing I am feeling up for it.

There were a few times over the past couple of years when people had surprised visited me and despite continually asking for no surprise visits, they still happened.

Family and friends were outside waiting and were upset and bothered when I didn't answer the door, because I was asleep and had my phone turned off so I could sleep.

I NEED notice when it comes to having visitors for a few reasons.

#1. I sleep a lot:
I'm not lazy, I am sometimes tired of having to explain and justify my pain or tiredness, but there are days if not weeks or months where I am asleep and resting. I turn my phone off on my bad days or when I have had very little sleep and need un disturbed sleep. So telling me the day before gives me notice for then being able to make sure I am up and ready if I am ready.

#2. My stoma leaks a lot:
My stoma leaks a lot, 95% of the time when I wake I am dealing with leaks. It is really stressful when woken and knowing people are outside knocking and waiting/expecting me. It is something that makes me anxious when I do realise people are waiting for me, as if I am home alone I have to try and deal with a leaking stoma whilist trying to get to the front door quickly (often I miss the postie or courier and have to drive to Coffs to get my parcel). It is also why I get upset when Palliative care would randomly rock up without telling me and then were cranky when I wasn't home to answer the door when I was, I was just in bed asleep... so when my stoma leaks it can take me time to get ready. It means needing to get dressed and cleaned up and clean my linens if needed. It is something that I can need time to be ready, and knowing someone is outside waiting for ages makes me feel more flustered.

#3. I often sleep starkers:
Because my stoma leaks a lot, it is just easier to sleep with either no clothes on or just undies and no PJ pants. Sometimes I wear a top sometimes just undies and no top... so it is less laundry to wash because guaranteed my stoma leaks often in the middle of the night or when I wake and it is hard to have to strip down while trying to do a bag change - all while magically avoiding making a mess! If it is just going to be me home it is best if I know if anyone is coming so that I can have notice and get a chance to get ready. When you surprise rock up it can be hard as my clean clothes could be in the laundry (in the dryer) and I have to try and get through the house with just a dressing gown on and hope if you're outside waiting that you don't catch my streak through the house to get my clothes.... so I need notice if you plan on coming for obvious reasons.

#4. I am often in pain and bedridden:
When Russ leaves for work of a morning he shuts and locks the door as he walks out. So sometimes if I know someone is coming to visit I would ask him to leave the door unlocked and shut. If this is a day when I am barely able to get out of bed it can be stressful knowing someone will arrive and I can't exactly get up to open the door. I was criticised last year (well, 2016 too) when I wasn't much of a host and "don't make people feel comfortable or welcome" because I can't be a host. I think it is hard for people to understand that it is painful and difficult to stand and walk let alone be a hostess. If you come and visit, please have zero expectations of what I am meant to do... don't expect me to go above and beyond to impress you. I am not being rude, you might think I am, but if you wanted a cuppa help yourself. 

On days when I am bedridden I would love visits, providing you are understanding that I am in bed and you can sit in my room chatting with me. But don't expect me to get up and entertain you, defeats the point of being in bed resting. Don't ask "when are you getting up" or "why aren't you getting up" because it makes me want to kick you up the butt if I could because I don't need to justify myself to anyone.

#5. I can't just simply duck out to the shops:
If you just surprise visit me and I don't know you're coming, you very well could be having a cuppa without milk. Some days Russ will make his coffee for the day in his thermos and takes it to work, it is a guzzler for milk. So its very likely that he uses the last of his milk as he leaves for work knowing full well that he has to buy milk when he finishes work in the evening.

If you arrive and we don't know in advance, even if you tell me in the morning, if Russ has already left for work it is too late. I don't have a car and can't drive much anymore, so if you surprised me it would mean I wouldn't have milk or cake or anything and would be a terrible host (again) and I would be feeling so anxious all day if you arrived worried that am I going to hear about this from others about how I am a horrible host... I don't mind if you do turn up unnanouced, just don't be upset if I don't have milk or coffee and can't get to the shops.

#6. I need a chance to cancel:
I always will try and attend something regardless, but there are times when I am in too much pain or phsyically unable to attend. Giving me warning and time in advance of a visit gives me the chance to cancel within reason. If I had notice I could tell you ahead of time to not waste your petrol in coming up if I wasn't up for the visit, I would hate you to be disappointed with your visit or feel like I wasted your time. If you surprise visit me I can't give you the chance to avoid being disappointed with me.

#7. Our house mightn't be visitor friendly:
The entire household chores and running falls mostly on Russ' shoulders. He also works full time. He has a roster system of how he does the house, one day he does the rubbish and kitty litter (and every second day) and some days he would do the bathrooms or vacuum. If you surprise visit us, we will feel embarassed because the kitty litter might be due to be done that day or the rubbish. It can be hard when you surprise visit that I am anxious if you are judging us the entire visit and will go off and tell others about how we live, which has happened, and makes us less inclined to invite you back. 

I could go on about scenarios, there is so many more.

But I do love a visit, just prefer at least a couple of days notice at the very least to make sure the house is ready or that if you're staying the guest rooms are ready. You can visit, please just understand that turning up and surprising me isn't what works best for us. 

I know it is hard to understand, but please do reconsider and try to give us as much notice for when you want to visit. I want to have a nice visit with you but I don't want either of us to feel uncomfortable.

If you do decide to that day or morning to visit, please give me as much notice as you can. If you arrived in Coffs at 9am but aren't visiting until 4pm Don't wait until 3pm to call me! Tell me first thing so I can have time to assess if I am up for a visit or under what terms. If you don't hear back from me or Russ before 4 hours before you're planning on visiting then it might not be the best day. If you don't hear from me, try Russ. 

But if Russ says "today isn't the best day she isn't well" please respect his call.

Don't continue to turn up and then be upset if you're outside waiting for me for a while and I am asleep and don't know you're there until an hour after you've sat out there waiting. If you haven't heard a conifrmation at least 4 hours before arriving on if I am aware you're coming or if it is the right time, than maybe it isn't the most apporpriate time for a visit.

Again, none of this is said to upset anyone, I want visitors I really do - I just don't do well with surprise visits. My health IS declining and I am spending more time in bed, so surprise visits really aren't ideal for us anymore. #sorrynotsorry

As I said, ask your loved one how you can support them and what they need from you, in my case try to avoid surprise or unnanounced visits.

Posted by: Talya AT 10:19 am   |  Permalink   |  0 Comments  |  Email
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Talya Goding - Feeling Ostomistic   talya@feelingostomistic.com.au  |  0447 426 860

Thank you for stopping by Feeling Ostomistic. It has taken a lot of courage to share my story and I ask that you show me and my site/blog respect and courtesy. Views expressed in this blog are my own and I am not a nurse or a doctor. If you need medical advice please seek your medical practitioner.

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