Things May Slow Down For A While.

I have some bad news. I’m going through an extremely hard phase of my life. It’s already affecting my ability to tend to this blog as much as I wish I could. Basically, one of the two people that I depended on in my life, mentally and physically, is gone. They helped me a lot with my disability so I need to relearn some key aspects of my life. I’ll post when I can but I will be slow. When I’m stressed mentally, I have some undiagnosed issues that make it hard for me to read and write coherently as well as generally focus. I will look into a diagnosis and learn if there’s anything that could help.  As always, if anyone wants to become a part of the SLH team, you are more than welcome, especially now. I have a pretty long list of ideas and requests, it’s just making the content that I struggle with. (I say this because multiple people have said that they worry about running out of ideas) This is not the end of this blog, it’s just that I produce most of the content myself so there’s going to be a slow season. I’ll probably try to shorten my posts or split them into parts to make sure I’m getting out content.  I am sorry about this but I will do my best :) I’ll also share hacks/ideas from other sources such as The Mighty and Spoonie-Living more often.  ~Amber

Announcement/Question

Hey everyone, I’ve had a small break as I’ve had a series of somewhat serious injuries and illnesses that have all taken a huge toll on my spoon count. I’ll post on my personal blog about some of what happened if anyone wants to know.

I’m working on a post/response to a question right now and you all could help me give a more diverse response.

The person is a friend of a spoonie and wants advice on how to be a good and supportive friend. They want to know of any what to/not to dos as well as general spoonie things to consider. 

I want opinions from different types of people since we are all different. What do you wish people would do or not do when interacting with you?

When finished, this post will contain common points that should be thought about, but will not tell the reader exactly what they should do. Here is an example of why this will be the case...

Some people don’t invite their spoonie friends out as much because they think ‘they won’t be able to go anyway.’, which really upsets the spoonie (especially if they would have gone), while some spoonies find it upsetting when they get lots of invites to things that they can’t do. 

So this post will highlight these subjects and will encourage the reader to consider what their friend would like and also consider communicating to their spoonie friend about these things. 

(My brain is working at 2% right now so just let me know if I’ve written anything strangely :s )

Hi everyone! I dislocated my elbow the other night and I've damaged something while doing it. It hurts to use my right hand so I'm typing with my left which is actually really difficult. Idk how much I will post or how long recovery will be. I'll make sure that SLH doesn't come to a complete stop but we may slow down.

Just a heads up!

~Amber

Hi Male Spoonies!

I’m hoping to slowly add more members to this blog so that we have a diverse team of different experiences. I don’t yet have any male members and would love to have someone who can better help and relate to our male audience. If you think you could help represent our male followers, then consider becoming a part of our team :) Conditions and disabilities can affect male and female bodies differently (medically or socially). Here’s one example: I was recently told by someone that their body type is a little abnormal due to a condition and they find it very hard to find places that will tailor to abnormal body types. He came across many female tailors so this seems to be a gender issue. 

Also! If anyone feels like they are under represented, please let me know. There are many forms of health issues and I want to have content for as many as I can.

~Amber

Very Effective Deodorant #66

It’s an awkward topic for some but there are health issues that can lead to a person sweating a lot or struggling to bathe as often as they would like. Either way, a good deodorant can really help your hygiene and confidence.

I personally recommend Mitchum Gel deodorant. Mitchum sells other deodorants but the gel is considered the best by many and I agree.

-First of all, I have never had such an effective deodorant. I mean it actually does last up to 48 hours (which I find untrue for any other brand I’ve tried). And it works so much better. Like I will not sweat at all for at least a day.

-The gel is absorbed very well. When you put it on, your skin quickly takes it in and there is no sticky residue.

-Because the gel is clear (and is absorbed so well) it doesn’t mark clothes. That’s pretty handy for when you get dressed and then realise you forgot deodorant. Getting dressed isn’t easy for some.

-It comes in a few scents (I love the ‘powder fresh’ scent) as well as a non-fragranced for sensitive skin.

-It’s designed to be kind to the skin despite being a deodorant. 

-It’s a vegan product that is widely available.

-Though it is a widespread product, Mitchum deodorants are often recommended to people who sweat a lot due to medical issues.

-It’s also helpful for chonically ill/disabled people who struggle to wash as much as they would like as it minimises body odor for a long time. 

I saw this specific deodorant recommended in Facebook groups many times for people who struggle with overly sweating or struggle with keeping up hygiene. I tried it and loved it and was even surprised as I didn’t know that a deodorant could work so well. I’ve recommended it to people I know and one they try it, they don’t go back. It’s slightly more expensive at around £4 - £5 but it lasts a long time and the better quality is worth it.

Does anyone else have any recommendations? If I can afford something and it would be appropriate, I’d like to try suggested things to give an honest review (based on suitability for certain health issues).

~Amber

Advice For Trying To Get A Diagnosis #65

This post will cover some advice on what to do when trying to help your doctor figure out your diagnosis, and for when you want to bring up a specific condition to your doctor. This is long but I’ve separated the subjects so that you can read what you want with ease and skip what doesn’t apply. Bare in mind that there are many brilliant doctors but there are unfortunately some unfair ones too. This will include ways to deal with the less fair ones.

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List all symptoms = More time, more understanding, more accurate diagnosis. The best thing to do for either situation is to write a list of ALL symptoms. That means that if you think you have a complex condition, write every minor symptom. Having the ‘less important’ symptoms may actually help you get an accurate diagnosis. It also gives your doctor a much better understanding of your health while also saving time to get more done in your appointment. It can prevent miscommunication or misunderstanding and it prevents you forgetting any symptoms. I’m not kidding, multiple doctors I’ve had said that they really appreciate it because it makes their job easier.

For example, if a person believes they have Aspergers syndrome, there is a lot to write down. They could write or remember a short list of the basics i.e. “social anxiety and confusion, bowel issues, etc” OR they could write a longer list of the small and weird things like “certain fabrics are unbearable, I accidentally offend people, etc”. All those little details support an argument for one condition while cancelling out others.

It’s very important though that you highlight the most troubling symptoms for you (or highlight what ever symptoms you want your doctor to pay more attention to). You also need to make the list easy to quickly skim read. So try to just use simple words on the list and save any explaining for you to do yourself. This makes sure that your doctor won’t miss the important parts. It’s also great for impatient doctors as they may choose to just read the highlighted parts.

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Info other than symptoms? Have you always had some symptoms? Did the symptoms suddenly or gradually appear or worsen? Do symptoms fluctuate and vary? Does anything make you feel better or worse? Do your symptoms affect any major parts of your life? Is there anything else that may be important?

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A symptom log will help your doctor see your daily health. Symptom logs are a brilliant way to get your doctor to understand your day to day symptoms and how they affect you. If your doctor doesn’t take you too seriously for whatever reason, a symptoms log helps here too. Click here to see how symptom logs can help you as well as how quick and easy they can be.

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Cue cards to keep you on track in your appointment. If you get anxiety or forgetful, it can help to make yourself cue cards for your appointment. Just a piece of paper that can remind you what you wanted to get done in this appointment. I sometimes do this with some basic bullet points and it really has helped.

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Medical history. Do you have anything in your medical history that could be referenced? Any blood test results? Any A&E/ER trips that are worth mentioning? Anything like that?

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Do you find you are not taken seriously? It might sound odd but if you feel you aren’t taken seriously by your doctor, it can help to bring another person. If you are young, it can help to bring someone older and if you are female, it could help to bring a male with you if possible. Many people that are stereotyped by some doctors have been ignored up until they bring a person along who is more respected/taken seriously. Some doctors look at certain people and assume that they exaggerate or want attention. It’s wrong but unfortunately a real problem.

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Invisible illness issues? If you have an invisible illness, it can help to have a witness. Many doctors have scoffed when I tell them how I dislocated something or when I just try to tell them information about my condition they aren’t aware of. Multiple times though they instantly believe it all if a person with me just says ‘she’s telling the truth’.

Also-

If you have an invisible illness, you can try to carry a form of proof. I have a letter from another doctor that explains what’s wrong with me. I had some minor proof before but asked this doctor is she could do it and she completely understood why. You could also ask for a copy of your medical record and use something from that. You could take a picture or video if a symptom is only sometimes visible (like a dislocation, a heart beating in some wrong way). It may help to invest in something simple like a blood pressure cuff that you can photograph.

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Don’t act smarter than your doctor or upset their ego. If you have a condition in mind, it’s wise to not insist that you are definitely right. There is always a chance that you could be wrong no matter how confident you are. If you don’t think that is possible or your doctor mistakenly thinks this about you, they are likely to take your judgement less seriously. Say ‘I think’ or ‘I believe’ rather than ‘I know’.

There are also doctors that get irritated or even offended when you act like you know better. Sometimes a patient will know better. Example: A general doctor likely won’t know as much about an uncommon condition as the person suffering from it (as we often want to learn more ourselves or learn from specialists). Try to make sure you ask your doctor ‘what do you think about this?’ when making suggestions.

I usually tell my doctor that I have a condition in mind. I then explain that it’s a common result of another condition that I have (always is the case). I then explain the symptoms. And I present this as a question, not a statement or demand. Like ‘I think this could be the answer but what do you think of this?

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Do you think you have a certain condition? If you have a condition in mind, explain why this is. Is it some specific symptoms that make you especially confident? Have you spoken with another professional or a diagnosed person? Is there a connection to an already diagnosed condition? It could help if your doctor understands.

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That’s what I have for now. I will tidy this up at some point. Do you think I’ve missed anything? Let me know! And if there’s anything you don’t understand, let me know so I can fix it (my brain is fizzled as always).

~Amber

Small fundraiser in submit-to-spoonie-life-hacks

Hey everyone, at submit-to-spoonie-life-hacks we have a fundraiser for a fellow spoonie. It seems simple to achieve so I hope we can get together and help! They have a great opportunity for their health but need to get to the site within a week or they lose this opportunity. Unfortunately, they don’t have the funds to get there which is why they are reaching out.

Please check it out and maybe follow to see any future posts by fellow spoonies or even submit yourself :)

Accessible Clothing: Feminine Items #64

Here we will focus on accessible feminine clothing items.

Let's start with bras. It’s no secret that many spoonies really struggle with bras. Many even give up bras as they find that they aren’t worth the hassle. So here are some alternate options that help with getting them on and/or comfort.

Front fastening bras:

Front fastening bras are much easier to get on and fasten for most. These are especially good for people with limited arm motion range. I have seen them use the traditional hook fastening as well as instead using a zipper.

Comfort bras:

The name says it all really. There are different types of comfort bras to suit your needs. Remember that you can buy a lot of different styles and designs that can look cute and/or sexy. A comfortable bra does not equal an ugly bra.

Bralettes:

Bralettes are basically bras without any metal (and often padding too). They are considered very comfortable but not very supportive for people who really need it. They’re getting quite popular now and can have much more detail than regular bras which I know some spoonies would like. They are somewhat considered socially acceptable to be visible or even used as a loungewear top which is good for spoonies who struggle with heat. Thanks to  bouquetchildotn for reminding me of this. I was actually wearing just a bralette as I wrote this and thought that would remind me to include it :’)

Skirts: Skirts are good for anyone who struggles to reach their lower legs/feet. They are easier to place your feet into than trousers, and when you go to the toilet you can lift a skirt which saves you reaching for your ankles.

Dresses, jumpsuits, and playsuits: These things are great for many of us. They are a whole outfit in one. There are all sorts of types and fits. A loose/flowy fit is super easy to put on and doesn’t need to have any tight or constricting areas. You can have a thin fabric that keeps you super cool in the summer, and you can get thicker options for when the weather is cold.

Do you think I’ve missed something? Let me know!

~Amber

Accessible Clothing: Braces #63

When wearing braces you have two options on how to wear them with your clothing. You can wear loose fitting clothes that your brace comfortably fits under or wear tight fitting clothes that your brace can fit over. Most people have a preference due to their style or comfort, and many braces don't give you an option.

Here’s some pros and cons to help you decide whether to have your braces over or under clothing:

Brace under clothes:

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Brace over clothes:

That’s what I have on this for now. Do you think I missed something? Let me know!

~Amber

Accessible Clothing... Series?

I was planning to write a post containing different types of accessible clothing and who they are helpful for. I’ve got quite a lot of different options and I’m trying to avoid writing really long posts.

So I’m going to split them up and post a few at a time. Probably around 3-5 different types of clothing at a time. Anddd while I’m here... remember to look at our submissions blog where you and others can submit topics, ideas, posts, and requests and of course look at each others.

The delay should be over :)

I’m sorry about the lack of activity lately but I’m working on some stuff now. I had multiple electronic issues but I think they are all fixed. I was working on one post focusing on accessible clothing yesterday and today. I’ve gotten quite a lot of suggestions and requests so I’ll split this post up a little to make it easier to read. That should be here soon :)