Spoonie in the city

The last few years I've shared with you some of my travel experiences and even compiled a whole series of blogposts full of tips and advice on how to cope with going on holiday as a chronically ill person. To read a round up as well as links to each detailed post from the series click here. With advice from researching and planning your holiday so that it tailors to your needs to surviving the airport and plane journey. However the only holidays (besides a weekend a few hours by car) I have been on since being poorly have all been beach type holidays (although I never actually went to the beach once) and have all been to the same place. Sometimes to the point of the exact same room. Familiarity and knowing you'll be comfortable there is something that I have stressed in my research and planning posts because it really is important. And for that reason as well as finding a place that feels like a second home were we are treated like family we haven't strayed from it. Of course this too was new at one point, but back then I was right at the beginning of my diagnosis and able to do a lot more. My parents had a holiday booked and I really didn't think I could cope on my own at home whilst they were away and so I ended up going too. Turns out it was a good call. Also I understand that for you, if you have not been on holiday as a chronically ill person before then familiarity is not something you'll get straight away. However my tips teach you that by doing your research and getting to know as many details as you possibly can, when you get there you already feel you know the place to some extent. Perhaps even before you book. Only book when you are 100% in your choice of hotel, resort and flights and you get a sense of that is a place where you can relax and have a good time. 

Due to me only going on the same sort of holiday and to the same place the majority of my tips so far have mainly been orientated around beach/ Summer holidays, based on my experiences. Although many of them can still be applied to your holiday of choice. At the beginning of the year an opportunity arose to break those boundaries and step away from the familiar. Some members of my family moved temporarily from the UK to Brussels in Belgium and as I knew I would miss them like crazy (they have twins that were 4 months at the time) I started to think about going to visit them.

I love city breaks. When I was healthy I used to love going somewhere that had so much to do and see. I was not really a fan of beach holidays and sunbathing for hours on end, feeling quite bored and like I wanted to be doing something. However of course that really does not comply with the chronic illness lifestyle and so I learnt to love beach holidays. I'll be honest it wasn't hard. When you're already used to lying around all day, able to do very little, getting to do that in glorious sunshine, where they understand the need for a siesta, is an upgrade. In fact the heat and mediterranean air made me feel much better, correcting my sleep pattern and reducing my pain levels, so that was a nice bonus. You can read about my holiday experiences here, here and here.

Therefore going back to try cope with a city break was one that felt rather outside my comfort zone. Or my 'I'm a sick person I'm not sure I can cope with that' zone. Such a party pooper. Of course despite being chronically ill I'm still me, and with that there is still that love of cities. Therefore you can see my conundrum. I understand that this city break was a little different with me going to visit family and yes that did make the decision to go much easier, indeed without them moving there I doubt the opportunity would have arose. However it still came with a host of new challenges. One of which being that we didn't actually stay with them in their apartment. As you can imagine a spoonie living in a small space with 2 4 month olds may prove difficult. Also I needed to make sure I had the equipment that I needed to be able to wash etc.

 Them living there certainly did make me think about how I could at least try and test the waters. Here, was a chance for me to experience something new and exciting. I had told myself at the start of the year that I wanted to experience as much as I could if I could do so and here was a great opportunity to do just that. I want to be as happy as I can possibly be. At the end of the year I want to look back through my memory jar and scrapbook and be reminded of all the great memories that I have despite the majority of my time being spent in pain and bedbound. They're already looking quite impressive, which is such a joy. However in order to make this experience possible and less imposing I needed to tailor it as much to my needs as possible and be armed with all my coping techniques. This included things like:

Finding the right hotel that catered for disabled guests, was close to were my family lived and was in a relatively quiet area. Also a hotel that did room service just in case I was too ill to leave the room. This is were Google maps and Trip Advisor were really helpful

Practical flight times

Booking special assistance

Being picked up when we got there and taken to our hotel

In grasping this opportunity not only have I made some priceless memories but along the way I have picked up some tips and advise for coping with a city break as a chronically ill person, which I can share with you. In my next post I am going to share a bit more about the trip and how I coped. Then I will do a separate post of tips and I also have a funny post that I've been trying to get done for a while now in relation to the trip. 

Hopefully be back soon. If you can think of any tips you would like to know regarding travelling with a chronic illness please leave a comment.

Siân

x

Forget the boom and bust?

 If you are diagnosed with M.E and are referred to a clinic in your area, one thing they will teach you is all about trying to avoid boom and bust and learning to completely redefine the word pace... you've  rolled onto one side now DON'T ROLL OVER AGAIN FOR AT LEAST ANOTHER HOUR!! This is the only real "sound advice" you are given. And that's if there is a clinic in your area. In many areas there isn't and you simply have to rely on the information that your gp does or does not have.

 

Anyway... So what is boom and bust? And why should it be avoided? Boom and bust is a term that in relation to chronic illnesses such as M.E, Fibromyalgia and POTS (to name a few) is where you have a burst of activity as a result of feeling more energized and having a better day. Perhaps "overdoing it" because you want to make the most of having that much energy or wanting to get a task done, especially if you have been wanting to do it for a while but not been well enough to. It can be so frustrating lying there unable to do the simplest of tasks as all the things you want to do build up. Consequently you can then experience bust, a crash to earth as a result of the activity. Where your body feels physically and mentally assaulted. Bust is also known as payback or post exertional malaise, which is a defining symptom for M.E patients. This is because the mitochondria, the powerhouse in our cells that turns nutrients into energy, is defective. This means that once you have used up your energy it can take a long time for it to build back up. When experiencing bust some will of course feel silly for having essentialy made themselves feel that way. Feeling it is all their fault they are suffering as they are. But of course it isn't your fault. It's the illness. And the fact that you are ill is certainly not your fault.

 

So the question is should we avoid the boom and bust? The thing is each time we use up our energy we don't know just how much our body will react. Sometimes just walking to the bathroom and back will wear you out as much as a trip to the supermarket. Unlike our phones that easily tell us how much battery we have left our bodies don't. The fact that we are always at the mercy of our symptoms helps blur the lines even more. Predominantly our energy is used on things that we cannot really avoid just simple household tasks or things we need to do to look after ourselves. Especially if we live alone. And yes we can often 'over do it' because like I said the temptation to do as much as you can while you can is one we will often fall prey to. We can of course get help but unless we are completely bed bound then the ability to do things for ourselves is one that at least makes us feel that little bit more normal and not completely useless, because we often feel that we have lost our independance. However although they are necessary, these are only the smaller things, although of course to us they can also be big achievements and although they say life is made up of the smaller moments and I can see the truth in that statement I'm not sure that quite applies to household chores and making sure you eat and drink. If experiencing boom and bust can be so easily done by these smaller things then what about the bigger things? Should they be avoided at all costs?

 

It is the bigger moments that can really leave their impact, whether that be positive or negative. Sadly we can't really control some of life's sadder events or know when they are going to happen and of course that is going to cause a lot of post exertional malaise and much grief. Therefore in those incidents it is highly likely we will use as much energy as we have and ultimately boom and bust. Moving on to the more positive big moments/events that create fond memories and make up much of our achievements. From graduating, getting married, having children to the holiday of a lifetime or a gig you have always wanted to go to. When you have a chronic illness getting to achieve these things can seem impossible. Your head is full of questions and doubt. I will leave school/college with no qualifications. No one will want me now that I am sick and need a wheelchair. How will I ever even meet someone when I hardly leave the house? And when I do I am always accompanied. You worry that travel will be too stressful and painful and that you won't have the control you feel you need. That you are far away from where you feel safe and comfortable in an environment you are not used to. You also feel like you would let others down. That they may have to miss out if you need to leave early from an event and feel bitter towards you. You often think it's probably too much effort and too much risk, and therefore not worth it. And of course that ultimately you will experience post exertional malaise afterwards and feel like you have been in an accident not at an enjoyable event. And that's no fun at all! Consequently your quality of life can be poor and you feel like you are missing out on so much that life has to offer.

I was reading through an old blog post the other day called reminicsing, in which I was looking back to the time I was more moderately affected and the time shortly before I was officially diagnosed. In it I said " I remember being on holiday just before my diagnosis and telling myself that although my life was about to dramatically change that if I could still steer it in a good direction and make new memories then I had to make the most of things when I could. I'd try my best to not just be defined by illness and keep developing the condidence I'd gained."  This is certainly a philosophy I still try too live by. Even if it's not one I can put in to practise that often. 

 Recently I went to the theatre to watch Pasha Kovalev from Strictly Come Dancing. Words cannot describe the effect that man has on me, haha. It took a lot of resting beforehand and lying very still to have enough energy to go. This is another thing a clinic would advise against, oops! I was so very thankful that on the day I did actually feel well enough. Going to the theatre brings up a lot of other complications for me such as noise and light sensitivities but luckily I coped well. I had packed sunglasses just incase. Naturally when you are at a dance show you are going to want to clap along and applaud and when Pasha tells you to dance you're damn well going to shimmy for him. However I caught myself thinking a few times, perhaps I shouldn't be clapping as much or doing the wheelchair boogie. That I would have hell to pay for it in the coming week. But that thought quickly got lost as I was emerced in enjoying the show. After the show I wanted to go wait at the stage door to meet the dancers. Again I thought Siân you probably shouldn't push your luck here and just get yourself home and back in bed. But if you have a choice to meet Pasha and he is meteres away what are you going to do? I think you can already tell the answer to that from the photo above and let's just say it was totally worth it. I had an amazing evening. This was in part due to the beautiful message of the show, which was all about positivity and Pasha wanting to make sure his audience went away feeling uplifted.But also that because for a few hours I felt less like a poorly person and more of a normal person. So full of life and happiness I very nearly cried, but I didn't want to shed any tears on such a good night, even if they were happy ones. If I hadn't have been in a wheelchair I could very easily have believed I was. And that was such a wonderful feeling. 

The point I'm trying to make without gushing too much is that opportunities like that don't come around that often, especially for us. For me personally I try and grab them. Whether it be from a trip to the theatre to hoping to be well enough to go on holiday. I have to plan very carefully and be over prepared for every situation, but I try not to let that detter me. It was my choice to book the tickets and give myself that opportunity and one that could very easily have not worked out by not being well enough to go but at least I had gave myself the chance. I know some people will think that if you then don't get to go that you are going to be really disappointed and hateful of the illness; and yes it would be disappointing but it still hurts to know an event is happening and doubt stops you from booking. Sometimes you simply need to take a risk and hope it pays off.

I'm not going to lie and say that it didn't hurt or cause PEM afterwards because it did. That is the nature of the illness and something I expect. Suprisingly it wasn't nearly as bad as expected so I got lucky there. Plus as I recovered I got to relive the night many times in my head and that made sure I had the biggest smile on my face. The great memories outweighed any pain.

So maybe booming and busting is a bit reckless and not advised but it's up to you to weigh up that risk and decide if you want to be more responsible for not causing yourself extra suffering or more responsible for your happiness and quality of life. Perhaps I am coming at this from the perspective from a former sufferer of depression and anxiety who feels the added pressure of maintaining my happiness. And perhaps you would choose differently. I really can't say I blame you. Payback can be a bitch and be really hard to deal with. I'm lucky I have people to help care for me 24/7 that can help me through the worst of it but I still dislike being reliant on them for basic care on those horrendous days. I don't wish to force this opinion on anyone. We each have a responsibilty towards our health. I only wish to say that we all deserve to be happy. And if we have the power to control that sometimes then it can be worth taking.

Siân
X

* Please note that booming and busting should only be on ocassion and that pacing for the majority of the time is still important for maintaining your health. Also note that this post is not an advise post and that each individual should take responsibility for their own health and decisions. I am only expressing my opinion using my experiences. However I do wish that you can all be as happy as you possibly can. Having a chronic illness is hard and finding ways to keep positive are important.

The legacy of mental illness: Are you okay?

Firstly, apologies for the sporadic blogging of late. As you will know I've been busy campaigning with Team Princess and that took a lot of brain power so lately my head has been a bit spaced out. Just today I tried to bring up the app screen on a bar of chocolate. Maybe I shouldn't admit this on a post where I'm writing about convincing everyone my mental health is fine but oh how I laughed at myself. On a good note while my brain is fuzzy, on days where my health has allowed all my energy has gone into living life to the fullest that I possibly can. More on that in the next post. So I hope you'll forgive the absense. I hope to be back to a blogging schedule soon, because I do miss it. Anyway on with the post....

When you have suffered from a mental illness in the past the chances are you will feel haunted by it long past your recovery. Some how no matter how positive, happy and confident you become there is often a nagging in the back of your mind "remember me? This could happen again." And for all we know it could happen again. An addict will always be considered suseptible to weakness and retriggering a habit and so they learn to avoid temptation as much as they possibly can. However with mental illness, even those that were triggered by addiction, it's very hard to avoid circumstances that could lead you to be more suseptible again. As they say, you can't stop life from happening. Avoidance stratergies for non addicts is futile to a full recovery, because you are still living in fear and not fully overcome the issues that bought on your condition. However of course the more we open ourselves up to the world the more of a chance we may feel we have of giving all those past feelings a green light to come interupt us once more.

There is also the prejudice of having a history of mental illness on your medical records. Sometimes doctors will see that and focus too much on it. Even if your symptoms are physical and years could have passed since you have suffered. When I was admitted to hospital after collapsing and being pretty much asleep for 3 days back when M.E hit me, because it was relatively close to my serious bout of depression where I had gone to A&E a couple of times or been sent for psychiatric evaluations at the hospital (yes I know that sounds bad but it really isn't when you desperately want help) they could obviously see this on my recent medical notes. Because of this once they had ruled out things like meningitis they began suspecting it was of my own accord, that I had overdosed or drank myself into oblivion, or just shut myself off from the world. I had been to a Summer ball the night before I collapsed, so of course this lead them to believe the former even more. Even though I didn't have any alcohol or drugs either for that matter so they could obviously see that in my blood work. It also helps that the junior doctor actually knows the difference between 2 paracetemol for the pain in your neck and enough paracetemol for an overdose, rolls eyes. I had to be asssessed by a psychiatrist again, although all I needed to say was I was not suicidal that I had been having the time of my life then bam my physical health knocks me down. Luckily that was it and he probably felt like they had wasted his time. No matter what you say though, because that is on your records they are going to ask about it. It's going to be a line on enquiry, or possible diagnosis until they have more answers. And that can feel really unfair. It can be upsetting because you feel scared and overwhelmed by these physical symptoms and those you go to for help will in part think it's all in your head. To be fair they have not seen the progress you have made, or how happy you have been, but it still feels like a kick in the teeth. You want to shout " you know why I'm doing okay now? Because as you can see from my records I sought help."

I know that I have all the tools and tricks to lead a positive life now that I consider myself to be recovered. Making sure that I choose to be positive as much as I can and make opportunities happen. Not bottleing things up and being open about my feelings. However I also know that depression can take control even as I fight to keep it a distant memory and that's not because I'm personally not strong enough, because in all honesty I think I am. It's our brains chemistry. My most serious bout of depression and anxiety took me at a time where I should have felt elated. I couldn't really understand how it was happening. And that in itself is a scary thought. To not have control of everything that goes on in your head. Therefore I know all too well that these conditions can creep up at any time and that I am not unsuseptible to their power. However having suffered in the past as well as knowing that that is a part of me and one that has left it's scars, I also know the warning signs and symptoms to look out for and be able to get help much quicker should I need to. Most importantly I know that I have overcome this before, that I had the strength to do so and that that strength has improved every day that I live depression and anxiety free. I feel that should I ever suffer in that way again, and there's always that chance, that I could handle it. Of course if it does happen I don't really know how I will respond but knowing that until that time, should it happen again, I feel I could cope and come out the other side stronger is a great safety net. 

We never know what is going to happen in life and therefore we really don't know how we will react in certain situations that may crop up in our future. Of course sadness is part of life. It may or may not lead to depression. But we can't live in fear of feeling emotions and sadness in particular, because we need to experience release. Avoiding those feelings will potentially cause more chance of us being suseptible. Having feelings is no bad thing.  

So I would like to say that yes I have a history of mental illness. It took over my life in a way that scared and overwhelmed me. But how am I now? Honestly, stronger and happier than ever. I know how to keep myself in check and all the warning signs I should look out for. As well as what to do should they arise. I know that it's ok to feel sad, frustrated or hard done by, especially as I have a chronic illness that has left me predominantly housebound. I worried when I was first diagnosed with M.E that I would be a sitting duck for depression. I even visited my local Mind and booked an appointment with my former councellor. But so far so good. 4 years later and I only had that one counselling session to express my anxieties about being diagnosed with a chronic illness and the effect that might have on my mental health. In the last few weeks I've also finally been weaned off my anti depressants. I haven't really needed them for a couple of years but have kept on them due to the interaction of my other medication working well for sleep and pain levels.

So if I tell you I'm not feeling good today generally I mean physically and that is probably an underestimation for feeling absolutely shockingly awful. I don't mean I feel depressed or down. And if I did I would certainly tell you, so that I can get things off my chest. So don't jump to the conclusion that not feeling good means I feel down. Accept that I will tell you if I feel sad or worried. And I will of course seek help if I feel I need it. I know my situation means I could very easily get depressed with living with a chronic illness. However, I let myself get angry and upset when I need to, allowing myself to vent. It might seem mad to actually say I'm happy, happier and more confident than I have ever felt but it's true. And I am so very grateful for that. I really do not want to experience what I did again but if I ever do please ask me if I am okay and please listen to my anwers. I promise I'll be honest and I promise I'll get help.

Sian X