Sunday, 22 May 2016

Mental Health Awareness Week

This week has been mental health awareness week, and, having had my own battles against mental ill-health this year, I didn't want to let it pass by unnoticed. This time last year, I couldn't speak about mental illness from personal experience, but now- unfortunately- I can, having been through an episode of depression almost a year ago, struggled with anxiety, and having most recently developed Post-Traumatic Stress.

There is still a stigma associated with mental illness, yet it affects so many people. It scares me that so many people don't get the help and support they desperately need, because they're scared of judgement.

I remember when I first had a major struggle with my mental health, just under a year ago. It was terrifying, but it was also terrifying to let people in. My depressive episode convinced me that people would think less of me if I let them see that I was falling apart.

It's simply not true.

The people who really care about you will do their best to support you through. That doesn't mean they'll always handle things perfectly, and mental health problems can cause some friction in relationships, but don't let the fear of people's reactions prevent you from getting the emotional support you need and deserve. People are more likely to be understanding of your behaviour if they know about your struggle.

I battled depression and anxiety for a few incredibly difficult months. My doctors and the other professionals around me were incredible throughout. They were very supportive and understanding, and I never once felt judged. When it's the first time it has affected you, it's easy to feel like it's some strange experience that's impossible for others to understand. I couldn't understand why I was suddenly crying so much about circumstances that hadn't changed, I couldn't understand why everything felt overwhelming to the extent that I struggled to get out of bed, so I thought no-one else would understand either. The truth is that doctors see these problems all the time. There are constantly so many people going through the same.

1 in 4 experience a mental health problem each year. 1 in 3 experience a mental health difficulty in their lifetime.

The other difficulty I want to mention is Post-Traumatic Stress. It affects 7-8% of people in their lifetime. It's not something that only affects people returning from war. It can happen to anyone.

Medical situations are not the most common cause, but they are certainly not an uncommon cause. It came as a shock to me when my symptoms started to emerge, because I didn't even consider that it was a possibility! In reality, some of my experiences were the perfect recipe, unfortunately (I was out of control of what was happening to me, pain was being inflicted, and I was fearing for my life..). What I was unaware of, was that any very difficult experience can cause it, and the affect can be accumulative. It's not 1 isolated event that caused my post-traumatic stress, it was lots of things that happened.

I'm not struggling to the same extent I was at one point, but it's still a daily battle. My anxiety level is still difficult. I don't get the full-blown 'flashbacks' that many people talk of with PTSD, because I have no way of visualising anything in my head (never have done)- thank goodness!! I do have intrusive memories though, and these strike me out the blue and can be really quite distressing. I'm also still a bit hyper-vigilant/jumpy. I find it difficult to be at ease- I have to constantly occupy my brain/distract myself. I find hospital environments enormously difficult, and there are television programmes I'd love to watch but don't feel mentally able to.

People seem to think people with mental health problems are at risk of being aggressive or out of control. Very few are. I'm at absolutely no risk of lashing out at anyone or being aggressive. My mental health is frightening for me, but there's no reason for anyone else to be frightened by it. PTSD is a normal reaction to an abnormally difficult life experience- everyone is potentially only 1 traumatic experience away from becoming a PTSD sufferer themself.

Mental health problems are hard to admit to, hard to seek help for, and hard to live with. But if you're struggling, please seek help! Please understand that struggling with mental health problems is nothing to be ashamed of. Please understand that if you open up to friends, most friends will stick by you and help you through- they'll think you're worth a bit of time and TLC even if you don't! Please, if you feel yourself slipping and things becoming overwhelming, don't isolate yourself, reach out and get some support in whatever form feels easiest to you- whether that's family, friends, doctors, a counsellor, a psychologist, a Facebook support group, an online forum, Samaritans etc etc. The NHS admittedly does sometimes fail people in terms of mental health, but there are so many ways to get support- if you need it, find one that feels 'safe' to you. If one avenue doesn't work out, try another. Just please don't give up on yourself.

To get over my depressive episode, I needed the input/support of my doctors, my parents, the few friends I let in, a university counsellor, antidepressants and time! But I did come out the other side, although it still lurks (mildly) on the side-lines, and I'm not immune from having down/dark days. I had the support of my neuropsychologist to understand and cope with my Post-Traumatic Stress, but I'll need further help from a professional here to come out the other side of that too. I'm sure I will though- time is a great healer, and psychologists help too! 

Mental health problems can seem so isolating and overwhelming, and it can seem like you're fighting it all alone, but, although you need to want to help yourself to get through it, and it's you who has to battle through and do things to help you cope and recover, overcoming it all can end up a team effort. Please reach out and accept help if you are struggling! I honestly can't emphasise that enough..

If you have a friend who you know is struggling, it can be hard to know what to do.. Encourage them to seek help, cut them some slack, be there for them- even if that's just silently listening (you don't have to solve their problems!), keep in touch (even if you just drop them very brief messages), don't treat them differently (still invite them to things, even if they repeatedly turn invites down), don't tell them to snap out of it/get over it or belittle their struggle, and if you've never struggled yourself- don't judge what you don't understand; you never know when the tables could turn- absolutely no-one is immune.

It's ridiculous how quiet everyone keeps mental health problems, given their prevalence. I can totally understand it though. I wrote a long post about my depression/anxiety in the past but took it down, as I felt too vulnerable. It's hard to put this information out there. But battling mental health difficulties is hard enough, without everyone's silence on the subject making you feel like you're the only one.


Wednesday, 11 May 2016

N:Rem sleep mattress topper tablet system- sponsored post

I have been given this product as part of a product review through the Chronic Illness Bloggers (http://chronicillnessbloggers.com/chronic-illness-bloggers/) network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

When I got the email through offering me the opportunity to receive the N:Rem sleep system comfort changing mattress topper (https://nremsleepsystem.co.uk/topper/to review, I was intrigued. It's an interesting product and concept, and not one I'd come across previously.

It's a mattress topper but comes in pieces/tablets with differing levels of softness, so you can put these together in an order that suits you. Each piece is made of reflex foam of varying densities. You get 2 super soft, 1 soft, 1 medium, and 1 firm (easily identified by their colour), which together will cover the length of the bed. The idea is that you can use the softer ones for painful areas, and firmer ones for areas needing greater support. You can re-order them whenever you need to (if a different area becomes particularly painful), and if you share your bed, a partner can have their own set on their side of the bed, with an order that suits them and their body. It gives you options and flexibility. With chronic pain, things change, and it can be a case of trial and error to find what works for you, so this flexibility appealed.

I get a lot of hip and rib pain in particular, so this was an idea that really appealed to me. The thought that I might be able to reduce pressure on body parts that are particularly painful was enticing. Anyone who deals with chronic pain will know that getting comfortable in bed is a huge struggle. Painsomnia (inability to sleep due to pain) is a problem many of us face on a regular basis. My hopes were therefore high, although, having lived with pain for many years, I knew I also needed to remain realistic.

When I opened the box, the smell of foam was quite strong (as you'd expect), so I left them to air for a while before use. This did go after a few days.

You place the different density tablets on top of your existing mattress. For those of you who are fellow wheelchair users, it's worth considering the fact that this obviously raises the height of the bed, so could affect transfers- it's 12cm deep, so not a huge change, but enough to notice- this could obviously be a help or a hindrance, depending on individual situation, just felt it was worth noting.

My mum put them on my bed, with a single fitted sheet around them- this did tend to make them buckle and pop up to begin with, but once she'd managed to get them flat, they did stay flat, and they've not moved at all since then. It's worth considering the fact that the extra height may cause issues with your usual bedding due to the added depth, but there are ways around it. I believe when you actually buy the product, you get a cover to place the foam tablets within too.

My bed was comfortable before, but I can certainly feel the difference. It's much squidgier (for want of a better word!). I have them ordered (from head to toe): firm, super soft, super soft, medium, soft. I get a lot of horrendous pain in my hips and ribs in particular, and this order has suited me really well. I haven't tried other orders (yet), because I haven't felt the need.



I have been feeling more comfortable, and although I do still sit up with my light on for a while when I go to bed each night (until my meds kick in), I don't think I've been kept awake specifically by pain, or certainly only rarely, since having the topper on! The very disturbed nights I have had (because of sleep reversal type problems or anxiety etc), I've been quite comfortable lying in bed. I turn the light off once I feel sleepy, and fairly soon fall to sleep, which is particularly helpful given that lying with my light off, waiting to fall asleep, can be a difficult time for me for various reasons. The shorter that time is, the better!!

When I wake in the morning, I do still sometimes have some joints I need to pop back into position, as has been the case for a long time, and I am still in pain, but my pain isn't through the roof. I can wake up and lie in the same position for a while without my pain getting too awful. That's a big thing for me. It's really nice to start the day without my pain already continuously at an unbearable level.

The extra height has made wheelchair-bed transfers more difficult for me, but I've found the topper beneficial enough that it won't be coming back off!

Is it the cure for my chronic pain? No- it was never going to be. But it DOES mean I can now sleep quite restfully without aggravating my pain, and feel fairly comfortable lying in bed in the morning, which is fabulous!

For further information about the product, please see their website: https://nremsleepsystem.co.uk/topper/ It's not a cheap product, but you can get a free trial to see whether it suits you, and there's the option of a £1 per night payment plan too. I'd say it's definitely worth a look and taking up the free trial if pain or discomfort is causing you real difficulties with your sleep!

If you have a product you'd like me to review, please contact me on Jess.cfs.blog@gmail.com - I'll only ever provide a full and honest review, but if it's a good product, that's nothing to fear 😉

Monday, 2 May 2016

ME/CFS Awareness

Today is 12th May: ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) awareness day. While my ME/CFS isn't believed to be the predominant cause of my current level of disability (that honor goes to FND), CFS is how it all started years ago, and is what has put enormous strain on my body, so awareness of this condition is still something I deem very important, particularly as I now know, and know of, so many amazing individuals affected by this debilitating condition. ME/CFS has had a massive impact on my body over the last 6.5 years, and it still affects me every day.

Chronic Fatigue Syndrome involves a number of different symptoms, all of which can be life-changing. Below I'll detail some of those most common, but there are many more potential symptoms.

Chronic fatigue (the symptom that people always think of) can devastate lives, and leave people living with such little energy that they live with horrendous limitations. It's way more than just tiredness- it's a toxic exhaustion, way beyond the experiences of healthy people's tiredness, that isn't relieved by rest. There are people unable to leave their houses. Some people never leave a single room. Some people are entirely bed-ridden. And then there are many, many more people living a life limited to an extent- they may use a wheelchair some of the time to conserve energy (among many other reasons), they may have to opt out of doing some things they'd love to do to allow them to do others, they may have to push their limits to be able to leave the house but then suffer consequences afterwards.

Payback is a phenomenon that ME/CFS sufferers and their close family/friends know only too well. A sufferer may go beyond their body's limits to do something, but then suffer a horrible symptom flare afterwards as a result. This can be to have an enjoyable day out, or can be something as basic as showering. It all depends on the individual sufferer and their level of severity.

Post-exertional malaise is the cardinal symptom of ME/CFS. It's related to payback, but is more specifically the ill feeling that suffers of this condition get following exertion. This can be caused by any activity that is pushing the limits of the individual sufferer. The only way I can describe it is like the feeling healthy people get when they know they're 'coming down with something', when you feel unwell due to an infection- that's how we feel from doing things.

Pain is also a common payback symptom, but is also something that many of us battle daily. All day, every day. It's draining and demoralising to hurt so much. And people don't appreciate the pain you're going through when you're able to put on a brave face and smile. If you're out and about and smiling, people think you're pain free, which is often not the case. That being said, there are times the pain overwhelms us and we do break down and cry because of its severity, but this is the minority of the time. Pain can be difficult to manage, pills don't always help, or don't relieve it completely, and sometimes doctors are reticent to give out medication strong enough to keep the pain at a bearable level. There are reasons for this, but it can mean pain has a huge impact on quality of life.

I think it's fair to say Quality of Life of some moderately/severely affected patients is fairly appalling. Particularly those that are in the dark and unable to tolerate sound or touch. Sensory sensitivity is something many patients struggle with to varying extents. Being stuck in a bed/room/house, unable to be involved in the outside world, and able to do very little each day, is difficult. Some people cope better than others, some people are dealing with more symptoms than others, some hours/days are better than others, but there are certainly times that sufferers feel desperately in need of a break from their symptoms. The symptoms are oppressive and constant and difficult to constantly live through.

The devastating impact of the condition can have emotional consequences for obvious reasons. There's no break from the relentless struggle. It's hard to watch friends able to do things you can't and living the life you wish you had. It's hard to hurt and have to cope daily with things that most others can't even begin to understand. For some people the emotional consequences lead to mental health difficulties; they develop secondary depression, or develop anxiety about their future. We might seem 'together' and as though we're coping fine, but it really is hard.

We need emotional support, but unfortunately the impact of the condition can lead to isolation. We can seem flaky or unreliable. It's difficult to get us to commit to things, because we never know how we'll feel. Even good friends can drift away as a result. It happens more often than you might think. The fault doesn't lie entirely with the friends though, illness puts huge strain on friendships, and sufferers sometimes struggle to maintain friendships and keep in touch.

Part of the reason why friendships are difficult for ME/CFS sufferers to maintain is because staying in touch can be difficult due to the cognitive difficulties caused by the condition. Sometimes replying to emails or texts is beyond us. We haven't lost our intelligence, but understanding what's been said, and being able to formulate a response can be difficult. There have been times that I've read sentences, and have known that I knew the individual words, but the sentence meant nothing to me. I simply couldn't understand.

Another element of the condition that can make cognitive difficulties worse is orthostatic intolerance or co-morbid dysautonomia. Our bodies struggle to adapt to moving from lying to standing. This can be so severe that sitting can cause fainting. Research has suggested that ME/CFS causes a reduced blood volume and we can get blood pooling in our lower body, leading to reduced blood flow to the brain and vital organs. Reduced blood flow to the muscles is also believed to contribute to our pain. 

Nausea can also be a serious issue. Mine got so bad at one point that I was being tried on all sorts of nutritional supplements, I was told I was at risk of death due to being severely underweight, and we were seriously considering tube feeding into my small intestine. Feeling sick constantly can be overwhelming. Being unable to eat is horrendous. Trying different medications for it can lead to dealing with the side effects of those in addition.

Another symptom that I have to medicate is sleep disturbance. Most people think that we must sleep a lot due to fatigue. The truth is that it's far more complicated than that. The 'tiredness' we suffer from doesn't help us get to sleep- it's not like a healthy person's tiredness- and we struggle with un-refreshing sleep (we wake up exhausted). While it's common in the early stages of the condition to struggle with hypersomnia (sleeping a lot), over time this tends to morph into sleep reversal (sleeping during the day, but unable to sleep at night), or insomnia. While it's tempting to respond to our comment that we're tired, by telling us to nap, or have an early night, please don't- it shows a complete lack of understanding of the condition if you suggest that we need sleep.

Something that makes our condition difficult is that there aren't outward signs of our symptoms- it's an invisible illness. It can seem that we're using our condition to get out of things, or it can seem that we're exaggerating, and maybe a tiny minority are, but it's likely those you're suspicious of are in fact struggling through far more than you realise.

ME/CFS is a very difficult condition to live with. It's difficult for those around us to understand, and can have a huge impact on friends and family members' lives too.

It's a condition that is also difficult for doctors to understand, and it's still not fully understood, which can be frustrating for all involved! New biomedical abnormalities are being found all the time though, so progress is being made, albeit slow.

If you're wondering why awareness matters, please see blog post: http://jesscfs.blogspot.com/2014/05/may-12th-international-mecfs-awareness.html

If you want to know more about the different severity levels of ME/CFS, please see this post: http://jesscfs.blogspot.com/2013/05/may-12th-mecfs-awareness-day.html

If you're reading this because you have a friend or family member with ME/CFS, please know that they will really appreciate you reading this, try to keep in mind the battles they're facing when you're frustrated by the impact on you/your relationship, but also remember it's ok to be annoyed by that impact sometimes- it's hard on you too (just try not to take this out on the sufferer- they're dealing with enough already). To those who know no-one with the condition: I'm glad no-one close to you is afflicted to your knowledge, but keep this post in mind when you wonder why someone is behaving a certain way- people can be badly affected by a condition, and yet look perfectly well- ME/CFS is one of many debilitating, chronic, invisible illnesses, so that 'able-bodied' person using a disabled parking space or toilet, or not offering their seat, may not be as able-bodied as you think. To fellow sufferers: take this day not only as a day to raise awareness of our plight and our cause, but as a day to remind yourself how strong you are for coping with so many symptoms every day!