Let’s Talk About This – 2

A couple of weeks ago I posted about a guy who questioned my use of a walking stick whilst walking home and I asked if anyone else had experienced anything similar.

I’ve had a couple of responses, all of which said they too have experienced some kind of judgement for being “too young” or not looking disabled enough to be using their mobility aids. Some of the prying questions shared include “what’s wrong with you?”, “what happened?” and “That’s just for fashion, right?” And I feel these are all incredibly inappropriate. People don’t questions those who have crutches due to a broken leg or a little old lady who walks upright but still has a walking stick, yet they seem to feel they need to “call out” those who look young and fit and healthy for using these same aids. It’s also no one elses business why someone is using a mobility aid yet people feel they have the right to ask and demand such information.

A few other things that people have had said to them whilst using their aids are “you don’t look handicapped.” and “you shouldn’t be allowed to work in public. You make people uncomfortable.” This is also really inappropriate and rude. Like I said before, it’s no one else business why someone is using a mobility aid but to say they make make you feel uncomfortable is selfish, unkind and, above all, completely insensitive. It is not our job, as chronically ill and/or disabled individuals, to ensure the healthy and able-bodied feel comfortable and happy around us. No one should be made to feel uncomfortable around other people but if someone in a wheelchair or using a walking stick makes you feel that way, then try to imagine how it must be for them. Don’t voice how they make you feel because it’s not that persons fault you feel awkward, they don’t control your emotions.

I know some people would advise to not say anything in these situations and I must admit, I’m not one for starting an argument or making a scene, but what do you think? Would you argue or answer someone if they questioned you for using a mobility aid? What would you say? Would ignore them?

Lastly, I want to say a huge THANK YOU to @maknaebias, @that-eds-life and @notsograndadventures for your contributions! You’re all amazing people and I really appreciate you sharing your stories with me.

Recovery update

It’s been two months since surgery so I thought I’d do a little update.

I haven’t had a partial blockage in a while now and I feel my appetite has returned so I’m eating normal food now in slightly smaller portions with the occasional snack in between meals. I’ve found a normal diet (including gluten and milk) is working fine for me at the moment but I suspect I’ll have to reduce my gluten intact later once I’ve recovered a bit more and my eating habits return to normal. My snacks are usually either crackers, PomBear crisps (I find crisps like Walkers don’t digest too well) or biscuits/cookies. My main meals mostly consist of chicken (breaded or in a non-spicy sauce) with some form of potato (chips, wedges, mash ect.) I can’t eat beans so I’ll sometimes have tinned spaghetti instead. Noodles and pasta are ok for me in moderation but I don’t cook a lot of it as it’s only me who’ll eat it. As for sweet stuff, pretty much anything is fair game so long as it doesn’t have any nuts/seeds or dried fruits in it. I sometimes binge on cookies or chocolate.

As for my walking, I’m able to walk just fine when I’m inside my own flat or at my parents as I know there are plenty of places to sit down if I need to. However, when I’m outside, I’m a bit slower and a lot more cautious of the people around me (I don’t fancy an accidental elbow to the stoma). I’ve been using my walking stick for the last month or so but I don’t feel I need it as much anymore. I’m sort in a grey area of needing it and not needing it so I’m trying to go out with it in my bag in case I need it later, rather than using it straight off the bat.

In regard to my stoma, it’s been better since using the barrier rings my stoma nurse gave me. The skin looks and feel so much better and the bags feel like they could last an extra day if I needed them to which is ideal.

Lastly, I’ve got an appointment to see my surgeon about closing off the blob later next month so if all goes well, I’ll be stoma-free by the New Year.

Let’s talk about this

I’ve mentioned in previous posts that I bought myself a walking stick to aid me in my recovery after my surgery last year. The point of it was to help me to walk faster and for longer. It also worked as a sort of “red flag” to others to give me space and extra time to cross road, move out of their way, ect. As I’ve had surgery on the same area recently, I’ve been using my stick again when walking for long periods.

One such time was recently, when I had to go see my nurse at my GP surgery which is only a short walk from where I live. I got there fine, and I was on my way home when something happened to me that I have never experienced before; someone jeered at me, asking why I was using a walking stick.

Now, I’m 30 years old and I don’t look my age. I also look perfectly healthy so when I use my walking stick, I understand it might look a bit odd. However, their comment made me a little upset and I realised that I shouldn’t have to put up with that. I have my reasons for using a mobility aid at the moment and I shouldn’t have to justify myself.

There is a odd thing that I have noticed as a young person using a walking stick; (some) older people don’t take note of the stick and brush past me with little to no care. By contrast, younger people give me space, offer their seats if there are none free, and hold doors for me. This isn’t to say that all older people are ignorant of others needs or that younger people are kinder, it’s just a observation from my experience.

Has anyone else had someone comment on their use of a mobility aid/s? Have you said anything or just ignored them? Have you also found that older/younger people are more/less cautious around you or are they about the same? I’m interested to know what other people have experienced so please let me know by comment or PM so I can put all together in a post later. Thank you!

Recovery update!

I managed to go out twice in the last five days! I’m back to using my walking stick but I don’t think I’ll be needing it for as long this time. I can walk faster and for longer now verses last year, but I still need the extra support when going out for a long time. The stick also acts as a warning to others that I can’t move that quickly and they may need to be careful when moving around me. It doesn’t always work though as I have had a couple of people (noticeably older people) who have felt it would be fine to just knock me with their bags. Luckily, I was stationary and with someone else when this happened but still.

(Side note: It’s odd but I have found that the people who are the most considerate and take note of my stick are around the same age as me (30) or younger. I don’t mean this as a slight against older generations, it’s just something I’ve noticed.)

Anyway, in terms of eating, I think I’ve been over-estimating my guts capacity because I have had stomach cramps on and off for the last few days. It was worse yesterday (Tuesday) but it seems to have gone for now. I’m finding that the cramps are most severe if I eat too much stodgy food (like bread, batter, pastry ect) and this makes me feel sick. I’m going to try and eat four small meals a day instead of two big ones (I don’t eat breakfast). For today though, I’m only having snacks every now and then because my gut is still sore.

An interesting week

I’ve had an interesting week; Tuesday night through to yesterday (Wednesday) evening, I experienced horrible stomach cramps and my stoma stopped working. I called my GP for a phone consult and she did a home visit (because she didn’t want me to walk upto the surgery) to listen to my gut and check I wasn’t distended. Typically, my stoma started working about half an hour before she arrived at my flat, but she said my gut didn’t sound blocked. It didn’t, however, sound quite right to her either so she said to drink plenty and to only eat when I felt like it. I didn’t have much of an appetite yesterday but it seems whatever was causing the cramps has passed because the blobs been active all day today and I’ve been eating little meals throughout the day too. Doctor said to call if the cramps start again so I’ll need to keep an eye on things.

Other than that, I feel OK in myself. I’m sleeping a little better and I’m wanting to move around. I’m getting a little restless sitting at home all day everyday so I’m planning on going out for lunch with my mum tomorrow. I just hope the weather is nice and that I can manage the walk.

I spoke to my stoma nurse yesterday and she confirmed that blood from a new stoma is common, but to speak to my GP is the blood is coming from inside my stoma. As the blood seems to have stopped for now, I won’t be calling my GP. However, if it happens again, I will.

The skin directly underneath my stoma was red and sore when I changed my bag yesterday but the barrier cream seems to soothe it a little bit. The annoying thing is, when I saw the nurses on Thursday, my stoma and skin were both fine. I’ve taken a picture of what the skin was like yesterday so when I see them next, I can show them. I’m hoping the skin clears up on its own and that the blood was a one off.

As for the cramps, it seems my eating mini pizzas causes them to get worse. I’m not sure why they do but I think it’s best I avoid pizza for a while. I’ve been using a hot water bottle at night to relax my muscles so I can sleep, but I still need to take painkiller. I’m still taking paracetamol regularly but I’m also taking codeine and buscopan (IBS relief) on occasion.

Recovery update 2

I’ve been home almost a week now and things have been both good and bad; I’ve been able to eat a bit more without feeling sick, I’ve been controlling my pain fairly effectively and I was able to walk a fair bit today with my walking stick.

However, I am still getting a lot of wind passing through my stoma, the skin around him is still a tad bit sore, and today I have experienced what looks like blood in my output. As it turns out, blood in output is quite normal but I did get a bit worried and I did several things to try and get answers.

Firstly, I posted on the No Colon Still Rollin’ Facebook page and the guys there were very supportive, saying it’s normal and not to stress too much about it. Secondly, I spoke to an out of hours doctor (it’s Sunday so my GP and stoma nurse are closed) and she said I could be seen in the emergency clinic. I didn’t really want to do this as I don’t feel this is an emergency and that appointment could be given to someone who really needs it. Also, while I was speaking to her, my amazing partner did a bit of research online and confirmed that it is indeed normal for new stomas to bleed a bit for the first five to six weeks. I am still going to call my stoma nurse tomorrow morning just in case, but this has put my mind at ease so I’m not too worried about it.

Recovery update

I’ve had an interesting couple of days; blob’s been ok but he was particularly windy yesterday and last night, and today the stomach cramps have increased so that I’m taking codeine as well as paracetamol to try and numb it (it’s not working that well though). I know it’s still early days but I thought the pain would be pretty low at this point.

Food-wise, I’m trying to have breakfast everyday (which isn’t something I usually do) and snack between meals to try and get my stomach and gut used to processing food again. I’ve also lost some weight since my surgery (just under a stone) so, although I don’t need to put any on as I’m just borderline ok for my demographic, but I wouldn’t mind putting a little bit back on so I don’t look underweight.

I am sleeping better, which is always a bonus, so I don’t feel like I need to have a mid-afternoon nap anymore, but I’m still very tired and I get worn out after doing simple tasks like putting some clothes away or putting something into the oven for dinner. I know it’ll take some time to build my strength back up though so I am trying to take it easy.

Day 1 of being home

Well, I’m signed off work for six weeks so I’ll have plenty of the time to recover abd regain my strength.

I was able to sleep a lot better last night and I’m slowly regaining since off my appetite. I currently have a craving for crisps.

You know, it’s a weird feeling being home after so long in hospital. Everything feels both familiar and not at the same time. I’m sure I’ll settle in soon.

andthosearesmalleragents:

fairygodrobot:

random-gallifreyan:

Do you guys know why I’m so adamant about you vaccinating your kids?

I’m immunocomprimised. It means my immune system is weakened. I have very weak lungs and I rely on herd immunity to stay safe.

I’m allergic to the shot people get for whooping cough. How do I know? I had a 3 week, painful reaction. Now, this was a while ago, before shit hit the fan with the whole anti-vax movement.

But do you know what my doctor told me? It was safer for me to get the shot that I’m ALLERGIC TO than rely on herd immunity because if I get the shot, I’ll be in moderate-severe pain for about 3 weeks max. If I get the disease, I will die. My lung capacity is bad enough, but my body is too weak to fight the disease.

So not only are you putting your child’s life at risk by not vaccinating them, you’re putting mine and all the other people who cannot be vaccinated at risk because of a selfish decision that isn’t backed by science.

god THIS. vaccinate your kids and vaccinate yourself too. my dad is also immunocompromised and relies on herd immunity. neither he nor anyone who lives with us can get live-virus vaccines (we can only get ones where the virus is inert/dead) because if he’s exposed to the weakened virus he will contract whatever disease it is, so herd immunity is SUPER important for everyone in our family.

the anti-vax bullshit HURTS people. my dad has been hospitalized before just from a common flu because people he knew didn’t get their flu shots, came in to work with the flu, and got him sick. even with my dad’s healthy lifestyle, the fact that he’s immunocompromised from leukemia means even a really common and easily treatable disease (the flu, bronchitis, whooping cough) could straight up kill him.

fuckin. vaccinate.

Also do you know how many people in the community are immunocompromised?

Every cancer patient

Every pregnant person

Just about every elderly person

All small children

Many people with invisible illnesses, such as autoimmune conditions, AIDs, congenital immune deficiencies, malabsorption issues etc

Heck, even those with jetlag or under severe stress are immunocompromised

In short, YOU KNOW LOTS OF IMMUNOCOMPROMISED PEOPLE. Unless you are a hermit, YOU INTERACT WITH IMMUNOCOMPROMISED PEOPLE ON A DAILY BASIS. GET VACCINATED!!!!