Health · Lifestyle

Am I Back?…

Since I’ve moved in with my partner, I have lost sight of any and all organisation. Looking after my home, and building the future has take priority to the point that I think I lost myself a little. The blog was the first thing to go, but I think now I am ready to do all I can to get it back. Back to posting 3 times a week, every week, and giving myself some focus.schizo

Although in every possible way, this move is exactly what I wanted; I see the love of my life every single day, and we are moving forward to set up our own lives, but that doesn’t mean it hasn’t been stressful. Actually its been incredibly stressful, and I’ve been really struggling with it at times.

I am not one to deal well with pretty much any form of change. Consistency is most definitely my favourite thing, but I appreciate that change is necessary in order to move forward for the better. It is so frustrating the fact I know this, and yet change still scares the life out of me.

But lately not all the changes have been for the better. I have had a bunch of new health issues, some of which have changed my life forever, and that is a very hard thing to wrap your head around. I will talk more about these over the next few weeks, but finding out that your body is uncapable of something you’ve based your life goals around is a really tough thing to come to terms with. I will talk more about this in a post in the future.

So I am now on the path of seeking help for my mental health. More help than just medication- which is all the doctors seem to be able to offer me. But while I wait, I have realised that I need to be doing more to help myself; and that starts with me making time for the things that I get a sense of achievement from. Starting with getting the blog back to a consistency that I am happy with, and starting back at university.

Fingers crossed that I can get my head straight and organised from now on, as I feel that this will really help me in the long run of things. But I guess we will have to wait and see.

Health · Lifestyle

The stress of adulting!!

I still don’t really feel like I’m an adult. I now live with my partner, we have our own home, our fur babies, and have to do everything for ourselves now. Yet I still don’t feel like we (well at least myself) are competent adults. Everything still seems so hard and complicated and completely out of my abilities.schizo

This feeling of being overwhelmed is just making me really rather stressed. I hadn’t realised it until the other night when I was laying in bed (with Ash snoring as always) not able to sleep and then my brain went into overdrive.

The main pinpoint trigger for my stress lately has been because of trying to sort out our universal credit claim. Going into this move we thought that I would be able to carry over my disability benefits and just change the address, however we were only told otherwise about a month into having moved. Because of this we have gone almost two months with only having Ash’s wage (which isn’t great).

Although I can understand that they have to make applying an official process, what I don’t feel like they take into consideration is that the process is a lot to handle for those with mental health issues. Although we have been going through the process for about a month now, we are only just starting to get some idea as to how much we are going to be entitled to.  This has really been a stress to me as I have not known whether we are going to reasonably be able to afford to live alone.

I just briefly want to mention the  nightmare we have been having with citizens advice over these last two months. We have both grown up being told that when you are an adult, and you get into a situation where you don’t know what to do, you can go and get free and accurate advice from The Citizens Advice Bureau.

We did exactly this when we started to realise that we were going to have to make the switch to Universal Credit. After waiting for over an hour, we got to see the lady. We explained the situation, I took all of my benefit paper work and my medical certificates.

After we finished explaining she went of to talk to a colleague, as she ‘didn’t know about this’. She openly said that to us, and that wouldn’t of been a problem if she had come back with any advice from the colleague. But instead she came back and said go onto the citizen advice website and then follow the advice on there. So basically, she was useless. We had already looked online before we decided to go and talk to Citizens advice, so we had already done this.

In the end we had to just bite the bullet and apply for universal credit even though we were still unsure about whether this was the right thing to do. Its only been through doing the application and going through the interviews that we were advised by the assessment people that we should of gone a different way through the system and we then wouldn’t of had to jump through as many hoops. We also wouldn’t of had to go through two months without any support.

I guess what I’m saying is that there is no problem going to Citizens Advice for help when you get yourself stuck in life, however its not all its built up to be. They are only human, and often they don’t know the answers. I just wish they wouldn’t then point you to their website which you have most likely already looked at, as if you don’t have a brain cell and hadn’t already used your own common sense and had a google to try and work it out.

But anyway, that is it. I just felt like it needed to be said as that too often the benefits system causes way too much stress for those of us that already have mental health issues. In this time I have had to up both my anti-depressants and my anti-anxiety medication. I will be doing a bit of an off load post in the near future that will talk about the health issue impacts and some other things.

Health

Having Chronic Illness and being in a Relationship…

This isn’t the normal post that I publish on here, my relationship is a rather private thing that I don’t always talk about. But when I started seeing posts about this, I just knew that I had to have my say. As someone who battles a number of chronic illnesses, I can tell you for a certainty that successful relationships are possible.

I first saw this on Instagram, when @chronically.ams posted about it. If you don’t already you really should go and check out her YouTube and Instagram, she is a fellow zebra that is just amazingly inspiring.

‘100 out of 100 relationships that involve caregiving fail’ – Dr Phil

I have been with my partner through the major decline of my health, and we are in the process now of moving out to our very own home.

During our time together he has had to rush my to A&E, visit me on bed rest during my two and a half month stretch of infections, and take me to countless hospital appointments.

He’s been by my side when I was blacking out cold and losing hour long chunks of my memory.

He has learnt how to sort my medications for me, how to strap unstable joints, and even how to do my hair for the days when my hands just wont work.

Now I would count much of that as ‘caregiving’, and we are most certainly in a relationship. And yet, it is not failing?

I wouldn’t go as far as to say that it makes us stronger, because I don’t feel that it makes a difference. It is something that has been part of my life for a long time, and he knows no different. We have learned about things as they’ve come up together, and its just part of who we are.

But apart from this, if you take chronic illness out of the situation, isn’t caregiving all a part of any healthy relationship?

My partner doesn’t have any chronic illnesses, and yet I still care for him. I often cook, do the laundry, and am there for him when he needs to talk through his day. We regularly have phone calls on his way home from work when he just needs to off load, or if something with his daughter is worrying him.

Relationships are a two way street, you both care for each other in various different ways no matter whether there is chronic illness involved, just because you care for those you love.

I would love to hear what your thoughts are with this. Do you have a chronic illness that effects your relationship? Do you think caring puts a burden on a relationship? schizo

Health

Traveling with Disability…

Travelling is always a stressful thing, with all the security loops to jump through, and the general concerns of making sure you have everything. This is only made worse when you have a chronic illness or disability. There is so much extra stuff that you have to remember when you are fighting a chronic illness, and a lot of it you cant go with out if you were to forget it.schizo

For this holiday, I have taken about two months to prepare everything that I need to take with me- you probably could do it quicker, but I’ve not been well and had to stop driving, so it wasn’t as straight forward as it could be. It has also been a long time for me since I last travelled, so I have been realising new things I need to sort as I have gone along.

The first major thing to sort out is always medication. Most chronic illnesses come alongside an expanse of medication that help you keep symptoms at bay and make basic things tolerable. Now for me, I have a lot of pain medication along with other medication to help with my stomach, sleep and mental health. With certain medications, such as morphine and some antihistamines, you have to have them authenticated by a medical professional. This sounds a lot more complicated than it really is, all you have to do is get a copy of your prescription, a letter from your doctor, and make sure that your medications have the label with your name and pharmacy signature on. I know that I have had to pay for the medical letter than was £20, but otherwise this is all pretty straight forward.

Now it doesn’t matter if you are going to the other side of the world or just to the next town, you always have to think through do you have the extra little things that help you to be comfortable? For me this consists of comfy clothes, supportive shoes, strapping tapes, and probably most importantly, my wheelchair. This time around I have also included a bunch of sterile dressings, I am currently having to use these for some ulcers caused by blood sugar levels. As some one with a lot of allergies I cant use most plasters, so I have to be sure to take everything I might need with me. Last thing I want is to have to try and find a foreign pharmacy and try and find plasters that wont cover me in a rash.

Finally, its just a matter of thinking through how you are going to get yourself and everything you need to the airport and through to the plane. I am lucky that I am travelling with my partner and all of his family, all of whom are very supportive with my disabilities. We are completely prepared (or at least I think we are), and have booked for the added assistance in the airport, so that I can go through security in my wheelchair. Between the eight adults, we should be able to manage the luggage and two children; but having support from those you are traveling with is always a real help- means that although I could self propel the entire time, I should only have to focus on getting myself around.

Although this will be going out too late to help me with this trip, I would love to hear any tips you have for traveling with disability. Do you have anything you find really helps you to prepare and get around?

 

 

Health

Why traveling isn’t for me…

Most people my age, and to be fair people in general, always seem to go travel, want to see the world. Have bucket lists for places they want to go, spending their earnings on lavish sight seeing holidays. Bloggers jumping at any opportunity to write blog posts about beautiful places around the world, and showing the world what its like to go on jet setting holidays. schizo

But truly it is just not for me. I am a person who loves their own bed, and my own home, and just generally the feeling of being in my own home. I may be moving, but I will quickly make that my own home and then be most comfortable there.

Most of my childhood, I would have a different holiday each year, and although I used to enjoy them and have great memories, I always had an uncomfortable feeling about it. Part of me always got very anxious, initially just about the flight and  travel, but as I got older I started having the anxious feeling for the entire trip. Getting uncomfortable about the fact I wasn’t cooking the food, that I didn’t know if the room was clean, that I didn’t know the bugs that could be getting around.

To begin with in my childhood, I only really remember it being in foreign countries, but as I’ve got older and been going to different places in the UK, I have noticed that it is with just about any trip that involves staying a night away from home. I have even had the same anxieties about staying at families homes, and even my partners.

I cant help but think that my fear of traveling is a lot to do with my health issues. I am constantly concerned that I will forget something that helps me manage my health conditions, or that I will get ill while I am abroad and feel completely alone in a country I cant speak the language.

That’s not to say that there isn’t a full list of things and places that I don’t really want to see, because trust me there are. If they could just move and turn up on my doorstep, so I could just do a day trip to see the world then that would be perfect. Sadly though, I highly doubt that that is possible.

But sometimes you just have to fight through anxiety in order to keep living your life, and that exactly what I am doing this month. I will do a post this week all about the extra precautions I have to make in order to be able to travel with my disabilities.

Do you enjoy traveling or do you find its just not for you? There is not harm in not loving traveling, it really isn’t for everybody, some people are just more stay at home people.

Health

Recovery Update March’19

Just in case you were missing it, I thought I would give you all a bit of an update of how I’ve been doing with my health recovery since such a rough start to the year. Well, I can tell you now that it has still not been an easy sailing journey.schizo

I am writing this a week before I go on holiday, so I still do not know for sure whether or not I will be being allowed to go. However I will say that it is looking very likely, so keep everything crossed and wish me luck.

So at the beginning of March, just before my birthday, I started feeling really rather rough again. I took to my bed, and just prepared to wait it out, hoping to be better before my birthday and definitely before my holiday. A couple more days and I had to go to the doctor as my fever was getting worse.

Turns out I had the flu, however I had developed bacterial tonsillitis on top of the flu- tempted to not bother with the flu jab next year. Saying that, I should just say that I had an allergic reaction to my flu jab, and have since had the flu twice since the jab- I’ve not had much luck.

To treat that I was put on a ten day course of strong antibiotics to try and kick it out quick. And in the mean time I just have to rest and take it easy, something that for once I am not complaining about. Thankfully I have gotten really into reading again so I am quite happy with an excuse to get through some books.

It is starting to ebb away now, my appetite is coming back slowly, and its getting easier to breath again, all looks good I would say. I might of had to spend my birthday on bed rest, and have to change all the plans, but at least it is looking like I will be able to go away at the end of the month.

As for everything else, I have not passed out now for over a month, and my drop attacks have gone back to pretty much their normal pattern. I have now got my appointment dates through for Cardiology and Urology, and hopefully now it will be clean sailing and no more need for hospitals until then.

That being said, I was diagnosed the other week with pre-diabetes. I was tested for diabetes just to see, as it runs in my family and I’ve been having quite a few issues with wounds not healing. So now I am on a mission to try and both improve my diet and lose some weight over the next twelve months before I get retested.

Finally, my ulcers are finally starting to heal up. Turns out half the reason they weren’t healing is because I am allergic to Iodine, which is what they were using to try and help them to heal while warding off infection. So I can no longer have anything with iodine in, and have now got to use the silver nitrate variant instead, I feel like I’m just getting fancy now. Got to change out my emergency medical kit.

That is it for my health update for today. I’m sure I will do another after my holiday and the consultant appointments, But for now, please keep your fingers crossed that I keep everything together and am allowed to fly at the end of the month.

Health

Recovery Update.. Feb’ 19

So far 2019 has been an absolute nightmare in terms of health issues; if it wasn’t one issue it was another, and add a string of infections causing my immune system to crash, and you can begin to imagine just how eventful it has been. I have now been on advised bed rest now since the 28th of December, and to be fair not really had the energy for doing much else.Mental Health

Since I wrote my latest Bed Rest Diaries post, I was diagnosed with yet another Kidney infection, so this has again set me back. Its been decided that I will see my Doctor each week now until my body gets itself sorted and it gets back to normal. The weeks course of antibiotics doesn’t seem to of cleared it up so I am now on another course of antibiotics to try and clear it up.

The odd thing is that I am starting to feel a bit better in myself. I have my motivation back to get things done; though this is an issue in itself while I don’t have the energy to do things.

So as things stand, I am still supposed to be resting, but my doctor has advised I start slowly getting back to normal. However I am now having to monitor all my major stats for the time being so that we can catch if anything goes down hill as quick as possible. This means that I currently have take my pulse, blood pressure and temperature a minimum of three times a day. If I have any weird turns or start feeling yucky then I have been told to take them then as well to see what is going on.

How long do I have to do this? Well until I get my cardiology appointment so that we can then properly look at what is happening. At the point of writing this, I am still waiting on that appointment, but I have now got my urology appointment through for the end of March. For once I am not bothered about being patient about it as my GP is being amazing at helping me to get through until then.

That is how my recovery is going for now, its very much a matter of slow and steady. This is certainly not something that will clear up by itself over night, its going to take effort and plenty of rest.

What’s the worst thing you’ve ever had to recover from?  Whether its mental or physical, any health recovery can be a tough challenge.