The Ugly Truth

Don't get me wrong, I care. I really do. One of my priorities is putting people before myself. I want people to be okay and I'm always a shoulder to cry on, a consolidating hug or an ear to lend for anyone who needs it. But the ugly truth of having the misfortune of suffering any chronic illness is that when you're not coping, you change. You become blunt, you become selfish.  I don't often, or at least try not to, let people know what I'm actually feeling or thinking in the overwhelming times, but if anyone knew I'd be incredibly ashamed.

I realise I planned on not ranting or complaining online but I truly believe this is currently my best outlet to try feel better about situations. I apologise for the amount of negativity in this post but this is the truth. The thing about being chronically ill is you fall into this pattern of acceptance and anger. Most days I accept that I'm ill, and that I will be for the foreseeable future.  If I flare up or have a lot of pain, it's whatever. It will pass, I'm still alive and there's worse than what I'm going through out there. But occasionally that outlook takes a complete U - turn.

Sometimes out of nowhere, you just can't take it anymore. One more flare up, one more pill, one more hospital visit, it's just too much. And suddenly you're hysterically crying alone in your room thinking 'why'. Why can't my body work properly? Why doesn't my head think in the right way? Why can't I be a normal bloody young person whos biggest issues in life revolve around the choices I need to make about careers, relationships and growing up rather than medications, burnout and flare ups.  But that's life, eh? You win some, you lose some. And that’s not fair.

 

I know people will tell me ‘life isn’t fair’, but why does that mean I can’t be angry about it? Because yes, I am angry. I’m angry and upset and all these other negative emotions over something I can’t control. All these ‘glass half full’ chaps out there, trying to be helpful with your comments of ‘it could be worse’ or ‘at least you’re not going to die’ or whatever other positives there is to having lifelong illnesses, make me instantly turn into the person I vowed never to be. People who downplay my pain or haven’t exactly got their head around to how much it effects daily life makes me think ‘I really wish that I could make you severely hurt all over, take away your ability to get out of bed for days at a time, take away your nights out and time with friends and replace it with isolated suffering. Then come back and tell me it could be worse’. I understand that there’s worse out there, I don’t need telling that. But just because there’s worse out there doesn’t take away the pain and upset that I’m going feeling right now. I’m ALLOWED to be upset, I’m ALLOWED to not be okay with it, and I’m ALLOWED to want people to understand and be there for me. So if people who have no clue could just experience this for a week, maybe it would make my world a little easier. Because right now, I’m fed up of faking that I’m okay just for the benefit of others who don’t know how to deal with me when I’m sick. But that’s incredibly selfish to even consider, and once I’m back in the right mind-set or this flare up finally subsides, I’ll absolutely hate myself for ever thinking about passing this onto someone else.

 

You can’t be strong 100% of the time, and when you fall into a place where you feel weak and vulnerable, its incredibly difficult to deal with. A flare up on its own is tough, without the added mental trauma of ‘giving up’ because that’s when you start to feel alone, and start having stupid thoughts and unreasonable ideas. I’m not going to lie, I have gotten to the point of being so low that my mind wonders to ‘What is the actual point of living if you have to be in pain every single day of your life’ because that’s the ugly truth of it. You need the support around you and the correct mind-set so you don’t fall into those thoughts regularly, because its shit. It’s shit you have to live with this so you need things in life that make it worthwhile.

 

Thankfully the way I’m thinking right now won’t last. I know this is only short-lived because of how unkind my body has been to me lately. When I start to feel better, I’ll be back on my feet properly – physically and mentally. I’ll go back to being at peace with this and no doubt the cycle of acceptance and anger will surely start again. The only thing I need right now is to feel loved and cared for and as though there’s a reason I’m plodding on through life while I feel lowest of the low. I need that little bit of support until I can get myself back to feeling like myself.  Because right now, I’m not okay, and that’s okay.

 

 

Sheep Have Failed Me

On an unrelated note, why is ‘sheeps’ not a word, yet the plural of sheep is sheep. English language is strange.


Onto the actual topic, sleep. I don’t think I’ve actually met a person that ‘counting sheep’ has worked for; it definitely hasn’t for me. A lot of illnesses come hand in hand with sleep issues and they often run in a vicious circle. For instance… less sleep = more pain and more pain = less sleep, so it just goes round and round.


First off, why can’t I sleep? For me it could be mental or physical problems. If I’m in a lot of pain, the chances of me being able to drift off are extremely minimal, I’m more likely to lay in bed making groaning noises to myself as I shift every 5 seconds trying to find the least painful position. There’s also the mental where as soon as I’ve got into bed, my head decides to overanalyse a three word sentence someone said to me six years ago – that and going through every aspect of my life in minute detail to create worries and issues that aren’t really issues at all.


My sleeping pattern includes laying there for a couple hours and not managing to reach the land of nod until the early hours of the morning, or falling asleep relatively quickly but waking up at 3am. Always 3am, I don’t know why my body clock enjoys 3am so much but I wish it would quit it and sleep through. If I wake up just the once, I’m lucky though to be fair. I can wake up multiple times in the night for no particular reason other than I can’t go through a proper REM cycle correctly. Basically, I cannot fall into a deep sleep with ease, therefor don’t get the regenerative benefits the body is supposed to receive while asleep – if I sleep at all.


I think the worst possible time to be awake is when you’re so tired, and you’re body is so done with the day, that the only thing you want to do is sleep…but your head won’t let you. You lay awake, absolutely exhausted yet sleep eludes you. Just me? At these points, you get desperate and start trying really odd things that could possibly help you get just a little bit of sleep. Counting sheep, weird hypnotising recordings, 100 year old breathing exercises… I tried watching boring documentaries to send me to sleep once, turns out I love documentaries. Failed.


So I’ve come to terms with the fact I’m going to be tired, borderline zombie, for the majority of the time I’m awake, but I have taken steps towards trying to make night time better. I’m not going to get a full night’s sleep, or any sleep, every night but the more nights I can manage will do me just fine. So I start with trying to get myself into a routine.


In an ideal world, I would have enough time in the day to have an hour long bath, then to slowly go through a wind down routine of moisturising and hair brushing, to then get into bed and have 30-60 minutes of ‘leisure time’ (reading or crap tv) to wind down the mind then lights off by 10 and boom, that’s a wrap. No, it doesn’t work like that. Partly because if I wanted to do that, I’d need to start at 6pm, and the majority of the time, I’m not even home by then. So the most important thing I find is to at least have a little wind down time, regardless of what time it is. Some time to yourself, doing something that isn’t going to be physically or mentally demanding. Make sure you’ve prepared yourself to switch off rather than expecting it just to happen. I also know that midnight means be in bed time. I try to be in bed for around 10, but latest 12 just to make sure that if I manage to sleep, I’m getting just about enough.


I cannot say it enough that it is so important that you invest in your bed. There’s no point in going for the cheap mattress and shit blinds that don’t block any light out at all. Sleep is the most important thing for us chronically ill folk. And let’s face it, we’re going to spend a lot of time in bed so it should be comfortable and not add to the discomfort you already have on the daily. The way you sleep is important too. This website describes the best kinds of sleeping positions and the benefits each have. Though honestly, I wouldn’t pay too much attention because I’m asleep…and I can’t really control my actions when I’m asleep (also a great excuse for when you dream your partner has annoyed you and you ‘accidently’ elbow them in the head…). I personally am a cuddler, I have to have my arm around something. I often have my pillow parallel to my body, slightly tucked under my chest for support so I’m not completely on my front but not completely on my side, with my arm tucked snugly around it. This is how I sleep best. I really do see the benefit in a body pillow for that reason.


Also, if you’re lucky enough to have a partner that is totally into spooning, that’s fantastic. When I experience a lot of pain in my back and down my legs, I personally find that I need some kind of support/pressure against the inflicted areas to reduce the pain. This is where having a ‘big spoon’ is great. You get the added bonus of it feeling quite loved up and affectionate, at the same time as having pressure against your hurty bits.


I have found that Smells are quite important. For myself, I often have sensory sensitivity, so smells in particular come across very strong. The wrong scent, usually something too floral or too sweet, can cause major migraines and destroy any chance of sleep, but the right subtle smell is a great way to relax the body. I like to light a scented candle or use oil melts up to an hour before bed so the room still smells nice but it isn’t too overbearing. I will also go for scents that are quite mellow like traditional vanilla and a personal favourite would be Black Coconut by Yankee Candles. I have tried the lavender pillow sprays from the likes of Avon and Tesco but the smell is way too sweet and applied to a pillow that is going to be pretty much on my face, it’s way too strong. I want to relax my brain, not overstimulate it with strong scents.

Honestly, when I started out with this post, I wanted to be able to include useful hints and tips on ways to get to sleep. Truth is, I’ve not figured that out yet myself.  My methods aren’t 100% full proof, sometimes they work, others I’m left lying awake in the dark. Plus everyone’s different, what works for some is not going to work for others. I’ve tried and tested so many things to sleep, but I can’t say some are crap and just don’t work at all, because they might work for some of you. I find guided meditation difficult to follow because I’m childish and words will make me giggle, whereas I know people who swear by it. So to finish off with, I hope you find what works for you. I wish a good nights rest on each and every person who will come across this post.

 

Tried and Tested

When you're suffering with pain, you begin to get creative with your coping mechanisms. I've tried many things over the years to help keep that little pain monster at bay. The go to's are usually prescriptions when you're first learning. For me it's tramadol. At the moment I take a 12 hour release dose which means I can just take one and be good to go for the day or the night.  I can take strong pain killers and function normally.  They no longer make me drowsy or knock me out.  I get minimal side effects now; though the itching that sometimes comes with taking tramadol can be a bitch.  Being able to tolerate strong pain killers is good in the fact I can have some form of relief and can function relatively normally. However I also find this quite frightening. Being able to tolerate them now means my body is building up a tolerance to the drug its self. I don't want to take the medication so often that they begin to be so ineffective that I have no more relief or I have to go down the rout of increasing the doses over and over; my body is screwed enough without adding stronger and stronger drugs to the mix. To help keep my painkiller taking to a minimum,  I only take them when the pain is too much to bear on its own. When the pain is at a more bearable state, I take other measures to try reduce the pain  just to be able to get through the day.

The first method I've talked about already: water. Water in its self has a lot of healing effects. From personal experience I'm in least pain when I'm submerged in water. Saying this, I am a huge fan of adding things to my water to make the whole experience that little bit more beneficial. You can read another post I wrote 'The Mermaid Life' that goes into a little bit more detail about the essential oils I add into my bath water, as well as other things such as the best way to run your bath for best effects and bath bombs and all that lovely business. Something I have tried since that post is epsom salts and magnesium flakes. The ones I tend to go for are the Dr. Organic range in Holland and Barrett.  Magnesium is beneficial for things like muscle aches, joint pain, and apparently improving circulation and sleep. Seen as magnesium is responsible for around 300 biochemical reactions in the body, absorbing magnesium through your skin in the bath just helps these processes along.  A quick piece of advice, though, if you are wanting to try using magnesium flakes / epsom salts is to stick with them. Please don't make your mind up on them after one or two uses as the benefits aren't all that noticeable from the get go.  I did not receive results from the products until I have had bathed in them 3 times a week for around 3 weeks. Like most things, it takes time to kick in.

I have a drawer overflowing with air activated heat pads. These are little pouches that adhere to your clothing and heat up as soon as you take them out of the packet. You can get products that last for 12+ hours and 24+ hours, though I have found that the 12 hour pads can often last me from the moment I get dressed in a morning to me getting back in bed on an evening. Most people will know the benefits of adding heat to an area that is aching for relief. The pads I'm talking about specifically, I have found in all pharmacies I've entered around the north of England, but even better, in Pound Land / Pound Word and Home Bargins. They are a great product that work and they’re not too harsh on the bank balance. These pads are great if you have pain in specific areas of the body as you can stick them anywhere and they wouldn't restrict movement if applied behind the knees ect as they are relatively flexible. A tip for back pain that I found quite useful is to pop a hot water bottle into a backpack/rucksack if you're going to be traveling or walking.

Heat in its self is great for those achy pains but when pain is caused or results in swelling around the areas effected, I have found it best to alternate heat and cold pressure to the area. For example, apply heat for two minutes, then cold for a further two minutes and repeat for as long as necessary. A good idea for something cool if you don't have any ice-packs around the house and don't really fancy something as cold as those frozen pees in the freezer is to fill a freezer bag/zip lock bag with water (preferably an airtight back), double bag (triple bag if you're a little worried) to prevent leaking and keep it in the fridge before use. Another alternative is to saturate a sponge with water, put this in an airtight bag and freeze overnight. The sponge then acts as an icepack, and the bag it’s in will collect the water as it melts.

Ibuprofen gels and anti-inflammatory gels are helpful for those joint aches. I tend to use gels mostly around my knees and fingers for relief. An issue I find with the gels, as good as they are, is that they leave a sticky residue on the skin even after they have soaked in. To combat this I often use talcum powder on top to just get rid of that sticky layer that's been created on the skin. It is a little messy so I tend to only do this on an evening or when I have time to spend getting ready; never in a rush! Using talc in a rush always ends up in a white hand print on your arse from pulling your pants up or something along those lines, very unfortunate. A gel I have found that doesn’t leave you so sticky, as long as you let it soak in completely before putting clothing on top, is Volterol Gel. This gel includes Diclofenac which ‘ is a medicine that works by reducing substances in the body that cause pain and inflammation.’ It’s not recommended to use this gel if you already take diclofenac orally, or at least ask your doctor first and be aware of how often you are using it.

Supporting your body in any way will help with the aches and pain, big time. What you sleep on is extremely important. To say you spend at least a third of your life in bed (well I could quite easily), its best invest in something that is going to support you correctly and allow for better sleep – as well all should know, the more decent sleep we get, the better. Along with that, make sure if you’re in an office on the day to day, have the correct chair and desk set up so your back and legs and correctly supported for as much of the day as possible.

My final point is not a product or tip really, just a bit of friendly advice. I find that my pain is much worse after I’ve been immobile for a period of time, so this would be first thing in a morning or if I’m sitting in meetings or on the computer etc. try to keep mobile and active as much as you feel comfortable with. It’s a difficult one to keep up with as ‘what makes us better? Exercise. What makes us worse? Exercise’. It’s a difficult balance to reach but simple stretches first thing in the morning and throughout the day. I’m also a megger fidget. I tend not to sit in the same position for more than ten minutes if I can help it so that my muscles and joints have less chance to cease up or start to become painful.

Just a note that these methods that I use to try keep my pain to a minimum are what I do on the day to day. If I am experiencing a ‘flare up’ where everything intensifies then I do revert back to the medications. As always, if you would like to try anything, please do so with caution. Especially when using products, please make sure you’re not allergic to any of the ingredients, and if needs be, please check with your doctor first to make sure nothing interacts with the medication you are currently on. Hope anyone reading this is experiencing a low pain day!