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?




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.


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.


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.



Bed Rest Diaries #4

Aha, this is rather comical really, as I have been on bed rest now since the 28th of December, exactly a month before I am starting this post. I had been really hoping that it was going to be a short stint, that I wasn’t going to do one of these posts, but as we are now rolling into month 2 of bed rest I thought I should really do another instalment.Mental Health

I have another doctor appointment in the morning, but I will be on bed rest now for the remainder of this week at a minimum.

So today, 28th of January, will start us off with Day 1 of bed rest.


Today has been a fabulous day for reading. Currently I am reading Spinning Silver by Naomi Novik, and am currently about a third of the way through (though this is before bed time reading). Honestly if you haven’t read this before then you really do need to, especially while it is still cold. I am ashamed to admit that I didn’t pick this up sooner, I really wish I had.

Other than reading today, I have been playing a new game on my phone, Tiny Tower. Wow, I didn’t think I would like this, but if today is anything to go by, it really is addictive.

Finally I have also got a blog post written, so I am going to finish January on a high note. Now it is time to head to sleep at the grand time of 8pm, praying for a touch more energy tomorrow.


Back to the doctors this morning, looking like the infection is more or less cleared up, but still need to rest because of collapsing a couple of times last week. More long term I now have a referral for cardiology and urology to try and get to the bottom of the constant issues lately.

Last night I got really into Spinning Silver, and am now on page 185. Todays plan is to chill out, work on some blog posts and read some more; oh and continue to obsess over Tiny Tower.

Its now just after 8.30pm and almost bed time. I have had a rather successful day all in all, I have finished off my January blog posts, and made a start on February. Been catching up on TV, and made lots of progress on my Tiny Tower. Now to head to bed and get back into Spinning Silver.


Bit of a late start to todays update, its already 6.30 in the evening. Today has been another reasonably successful day despite my Fibro pains really being nasty in my legs today. But I have got another blog piece done and ready, and worked on some more.

Same as yesterday I have been really into Spinning Silver, now currently on page 282, and determined to have it finished before my partner is over on Friday. I well and truly am hooked on Tiny Tower as well, I think Ive been playing it all day while getting on with other things.

Probably not another update today, as just going to rest and get an early night to read my book, talk tomorrow.


Yesterday I was super grumpy, so I didn’t really think that an update was a good idea, as I would just be moaning and groaning about nothing. So instead I thought I would just skip the day and get back to you today.

Its already almost 7pm, and its my Nan’s birthday so today we have spent the day relaxing and just watching silly TV and having a good laugh. I did manage to finish Spinning Silver last night, so tonight I will be picking up After the Eclipse, my first book for February.

Generally not  really done anything productive today, so will be back tomorrow, as tonight all we will be doing is having a birthday meal and probably an early night.


Last night ended up being a later night than originally planned, we stayed up playing Yahtzee and just generally having a bit of a laugh. But unfortunately this meant that I was over tired and had a seriously bad nights sleep. So today has been a day of resting and feeling tired and sorry for myself.

All I’ve really done today is work on a review for next weeks blog, and read After the Eclipse by Fran Dorricott. Ive gotten to page 47, so not too far in yet, but I am loving it already. Early night to read is the plan for tonight. Now as I feel like I’m repeating myself, Im going to call it a day, and do my final day of this diary tomorrow.

Oh, and you really should play Tiny Tower on mobile!38329334


Today has been a little different, I actually left the house. I went with my Dad on the dog walk, and then even went to the shop as well. For someone who hasn’t left the house for several weeks other than for hospital appointments this is actually a pretty big deal. I certainly am exhausted for it now, but oh well.

Last night I got really into ‘After the Eclipse’ by Fran Dorricott; currently up to page 114, and can not wait to go to bed and read again later today. Have a feeling that I will fly through this one, as it just feels like my sort of psychological thriller.

For now its is 4.30pm, we’ve got the Arsenal V Man City game on, and I’m going to work on some blog stuff. Talk later.


So I forgot to check back, but that is this bed rest diaries over. Over the course of the week, I managed to read Spinning Silver, and just under 200 pages of After the Eclipse. I think I can finally say that the reading slump is letting me go. But I think my biggest achievement of the week was reaching level 21 of Tiny Tower- yes I am addicted, and it is a problem, but you seriously should go play.

What do you do when you are unwell and have to go on bed rest?



Dealing with Negativity….

Surely I can not be the only one that gets very annoyed by people being so negative, while complaining that you are being negative. This has been something I have been struggling with a lot lately. Mental Health

On and day to day basis I struggle quite a lot with trying to stay positive because of my pain levels, tiredness and just generally feeling unwell. However I have always worked very hide to try and stay as positive as I possibly can, and see the bright and positive side of everything. Even in the darkest moments I will try and smile and laugh where I can, whether this be by mucking around or just generally being silly.

But, and I’m sure everyone can appreciate this, if the people around you are being negative then it does bring you down; though this is made even worse when the person who is being negative, then goes on to complain that YOU are being grumpy and negative, and being a downer.

This will regularly happen in my life, and it makes me flip every time. As soon as this happens I can not help but point out all the negative or nasty things that have been said, and just have a go right back at them.

As you can imagine this does not help anyone, and instead just causes more arguments and as can be expected more negativity.

Sometimes I just wish that people would accept that they are in a negative frame of mind and deal with it themselves, just like I do on a regular basis, rather than trying to spin it onto someone else.

Now I can understand how people could say that that is exactly what I am doing, but the truth is, this happens regularly with the same people. It will always follow a day where I have sat quietly because I have quickly noticed that someone is in a bad mood. Listening to various comments throughout the day that just gives evidence to the mood they are in. And then one bad look, one slightly negative comment and all of a sudden it is all my fault for ‘being in a bad mood all day’.

But anyway, that the moaning all done and dusted for another day. I would love to hear if anyone else ever has this problem? How do you deal with it?


Tips for Chronic Pain…

If you have been around here for any length of time, it should be no news to you that I have been suffering with chronic pain for quite a long while. I have Fibromyalgia and EDS (Ehlers- Danlos Syndrome), both conditions where a major symptom is constant pain, that although is always there it can vary.Mental Health

For most people that suffer from chronic pain, and it is mostly just about finding ways to deal and cope with it. These can be treating the physical symptoms as well as dealing with how it effects you emotionally in your day to day life.

Me personally, I have a range of medication, most being pain killing medications, such as tramadol and morphine, but I also have Naproxen to try and deal with the source. In addition I also have medication for depression that is caused partly because of my pain levels and how it effects my life.

Now not everything works for everyone, and when it comes to medication you have to go through your doctor as they are the only ones that will know what is best for your personal situation. But there are things you can do for yourself.

Baths are a great way of relieving muscular pain. This can be caused from chronic pain, or even just sports injuries; siting and relaxing in nice warm water can work wonders for an achy back or legs. Its no miracle cure, but I have a bath before bed every night as I find it can just dull away some of the pain in my legs.

Another method that I use a lot is heat packing. Now some people find that ice packing works better, but they are both basically the same thing just opposite – I know that makes no sense. Essentially all you do is pack the painful area with either a hot water bottle or an ice pack, depending on what you find helps. So for me, each night I will pack my back, hip and sometimes legs and shoulder with hot water bottles; this eases off a lot of my pain just before I go to bed so that I can rest, relax and hope for a good nights sleep.

Although this one may be obvious, a lot of people don’t always think about it, and to be fair I was one of those that didn’t really think about it for the longest time. Change your clothes so they don’t put pressure on your pain spots. So my hips are a major pain spot for me, and I always found that jeans were too painful if they were around my hip. Nowadays I have discovered that I am better off with leggings that go over my hips and grip nearer my waist. I know that this is worse for some people so you really do just have to work out what is best for you; it took me trying several different styles of trousers to find something that wasn’t so painful, and it really it just trial and error.

Then finally, distraction. I know that this sounds super obvious but also many sufferers are probably looking at this being like ‘REALLY?’. I know that this can be a really challenge at the very best of times, but it really can be a real help. Ways to achieve this can be different for each person; for me its best when I read. I can sink into a new world and be absorbed for a little while until Im next due pain relief, or something. I know that others find it best to be drawn into movies, or video games and even some that find that learning new things can really help. It is just a matter of being busy so that you can just sit and get yourself worked up and down about your pain; this will never take away the pain, but it can sometimes just push it to the back of your brain for a little while so you don’t get as annoyed by it.

They are all my tips for dealing with Chronic Pain, I am always happy to talk to people about it, whether it be exchanging techniques or if you just want more information, plus I’m always here if you just need to have a moan and get it off your chest.