Saturday, 8 August 2015

Severe M.E Awareness #Severe M.E

Today is Severe M.E Awareness Day - I usually always try to look on the bright side, make the most of life the way it is and try to do something to help change things for people with M.E. I thought since it's severe M.E awareness, I'll post things I usually try not to dwell on or think too much about because that's what Severe M.E is!

Severe M.E is;

Waking up with paralysis, speech unrecognizable although in my mind I'm telling someone clearly what I'm trying to say. Using communication sheets to tell people if I need turned, am too cold, or anything else I want to tell them. Knowing it's already lasted over 12 hours and wondering how long more will this last? Will the paralysis and loss of speech definitely stop?

Feeling invisible. Spending your days, lying in a hospital bed in a darkened room. Friends don't bother any more, family don't visit and spend some time together. Life goes on without you. Cut off from people, cut off from society, cut off from the world!

Being a parent but not feeling like a mum at all. Knowing that you're missing out on your child's life, watching them achieve things, try things for the first time and just having fun! Hearing your child cry, realising that they are hurt and not being able to get to them, hug and comfortable them. Trying to listen to your child telling you something but struggling to take anything in at all. Not being able to be there with them to share those special moments,swimming, riding a bike for the first time, their solo in the hip hop show, going down a slide for the first time.

Existing where you're totally reliant on others for everything. Carers calling several times daily, getting washed, turned in bed, drinks brought to you. Hating the fact that you're lying naked while someone washes you but knowing that it's needed. Knowing that without other people, you couldn't cope or survive on your own at 32.

Living with a catheter. District nurses coming to change them every 12 weeks or whenever there are problems. Carers changing leg bags and flip flow valves weekly. Carers checking and recording the output. Having a night bag connected nightly and removed in the morning. Hating the fact that someone has to empty what came out of your bladder.

Being completely confused, so confused it's distressing. Spending 20 minutes trying to remember the word box. Not being able to understand things a young child could easily do. Having to be told your granny is in hospital 4 times, each like you were hearing it for the first time eventually being able to remember. Realising you've asked someone the same question several times already that day. Not being able to find the words to speak a simple sentence.

You're body crashing completely, sleeping constantly for 18 hours waking briefly to take a drink then back to sleep for 22 hours. Sleeping so long with no ability to turn in your sleep or push the quilt off you if your too hot. Realising that it's been days, weeks and at worst months that you've existed like that. Carers or partner waking you to try to get some fluids and meal replacement drinks, falling asleep while they do. Having no memory of things that were said in the brief moments when you were awake.

Realising that you're missing out on life! Not having a career, family holidays, seeing the world, watching a sunset, listening to the waves as the tide comes in, having fun and enjoying every second you can and taking every opportunity to do try as much as you can!

Living each day in constant pain, sometimes so bad you literally can't think. Muscle spasms being just another part of daily life. Your body twitching and jerking, leaving your entire body aching more. Waking up with sore and stiff joints, muscles so sore you can't move them yet - wondering if you feel like this at 32 what will waking up feel like at 50? Having such severe headaches you think you're bound to pass out with pain soon.

Having constant problems with equipment, care, accessing a G.P, getting your medication adjusted. Struggling to cope but having to deal with the dietician, social worker, carers, district nurses, speech and language therapists. Only been taken to vital appointments, tests or hospital. Every outing being laid flat on a stretcher and traveling by emergency ambulance with entinox

Not being able to spend the time you want with those you love and care about most and knowing that time is gone forever.A medical professional referring to you as seriously ill and later after the shock, realising that they're right. Hating the fact that this horrible illness doesn't just affected your life - but great affects he lives of your family, those closest to you!

That's what Severe M.E is!

It's also realising that every moment counts. Appreciating the smallest things. Treasuring every special moment spent with those you love, holding on to the good memories to help you get through the worst and hardest times. Trying to adapt and do something important with your life, it's just going to have to be done from bed. Being grateful that you can do all the things you can and that your health isn't a lot worse like sadly other people's health is with this illness. Feeling happy to be alive!!!

Sunday, 24 May 2015

Learning the hard way; In order to do more - we often have to learn to do less!

It's natural the people want to fight an illness, push themselves to do more, be determined not to give in to the illness - it's human nature. With the majority of illnesses and conditions the determination and desire to carry on regardless doesn't pose any problems, it actually helps. With M.E things are very different - I learnt this the hard way!

For years I didn't realise I had M.E, when I was really young I was taken to doctors with severe headaches, episodes of blurred and double vision and dizziness. I was thought to be making it up, my mum continued to bring me to different doctors saying a child at 4 or 5 doesn't know about the symptoms I was describing. Eventually at 6 or 7 I was diagnosed with childhood migraines. At 8 I was in a car crash, our car was a total write off. Then at 14 I was diagnosed with a condition in my knees were the bone scrapes against the knee cap rather than gliding along cartilage. I started having back pain prior to my teens.

So up until I was 20 I never realised that there was another problem. I'd always just thought that the pain I felt was from the car crash, knew I'd migraines and ignored the extreme tiredness and any other symptoms I felt. I'd been called lazy in primary school which sort of stuck with me - so when walking home from school and wanting to lye down on the ground or pretending to be sick at school so I could go to a bed in the sick room and sleep all day, I just thought it was laziness. I managed to just get on with things though.

 When I did get a diagnosis of Fibromyalgia and M.E in my early 20's my family didn't believe it existed or thought that it was "just tiredness" and "aches and pains". For years then I lived in a push - crash cycle pushing my body to do more than it was capable of doing and then crashing completely afterwards, not knowing the detrimental affect that it was having or would have on my health.

Although trying to explain my M.E, people didn't understand or I was told it was all in my head, so it was easier to hide it and if asked how my 'aches and pains' were I'd say I was fine. I had a young child then and pushing my body was the only way I was able to do things, trying to push past the complete exhaustion,  pain, muscle spasms, migraines and other symptoms.

To the majority of people I seemed ok, I was using crutches at the time but managed to get to the doctor, visit relatives or have a family day out. The saying that 'no one really knows what goes on behind closed doors' is very true. No one realised that after a visit to family, shops or a day out that my body would crash completely.

My body would generally crash the day after I'd been out. When my body crashes I can sleep constantly, anything from 18-23 hours at a time, only waking to use the toilet, take a drink and then back to sleep for a similar amount of time. This usually lasted 2-3 days then, other crashes lasted weeks.

It's hard for someone who doesn't have M.E to understand what a crash feels like. It's like being tortured, I would be in agony but unable to wake up to take painkillers - often unable to be woken at all or if I was woken to eat, I'd fall back to sleep with food still in my mouth. My symptoms were worse when I crashed, increased pain, muscle spasms and muscles twitching and jerking, migraines etc.

 I would need to get to the toilet and be trying to wake myself up but my body was so exhausted I couldn't waken. Many times I'd try to wake myself up enough so I could get up - feeling guilty because I wasn't spending time with my son but my body had just shut down. When sleeping constantly like that you loose all track of time. I would be awake briefly at times when my son or fiancé came in but later have no memory of conversations they had with me as my body was so exhausted my brain wasn't able to function properly.

Gradually I'd come out of the crash and go out again to visit people, to shops etc - 'normal' life had resumed and people just assumed I was doing other things in the time they hadn't seen me. I wanted to look after my granny when she was ill although I wasn't physically well enough to do so. Granny was an amazing, kind and caring lady, she was more like a Mum to me than a Granny and had spent years looking after me so it was a privilege to be able to look after her when she needed it.

For months I helped granny with personal care while my fiancé did the things I was no longer able to do, cook dinner, make lunch and cups of tea, light the fire. I didn't know it at the time but my body was running on adrenaline in order to be able to help granny. I crashed on the days someone else was with granny and slept constantly. Over time things got harder and symptoms worse, I'd have to sleep on the sofa and have my fiancé wake my when I needed to take granny to the toilet.

Granny had a fall and was sent to hospital, she later when into a nursing home. Once I stopped looking after Granny the impact of pushing my body beyond what it was capable of for so long became evident, I had a relapse and was in bed for 4 1/2 months. I slept almost constantly through out this time, my throat was so sore I lived on milkshakes with ice cream loosing 2 1/2 stone.

My health had declined, symptoms became worse and new symptoms appeared. I started to experience paralysis with loss of speech. Numbness and loss of feeling in my arms and legs became more frequent. It was during that time I got a hospital bed and when my body got stronger and I was able to be out of bed it was from then on I needed to use a wheelchair.

I didn't know then about pacing with M.E, that I should have been alternating activity with rest. I'd not looked into M.E too much online and didn't know that with M.E - any activity that the body cannot easily tolerate can cause a worsening of symptoms, relapses and disease progression. So with my new wheelchair, although my M.E was worse I continued to live in a push-crash cycle - although the crashes were worse and longer.

I'd try to be out of bed for a few hours or do something but then end up back in bed. I pushed myself again to do things, have a family day out but then would sleep constantly for days or weeks at a time. I felt so guilty, I was missing out on my sons life. I was told by others that I needed to do more, get up out of bed - I couldn't, my fiancé knew I couldn't but people telling me I needed to do  more only increased the guilt I already had. At that stage because my health had got worse, I couldn't push my body the way I used to so the smallest activity made things worse - yet determined not to let the illness beat me I pushed myself to do things as often as I could.

My family hadn't understood I was ill to begin with so couldn't understand why I needed a wheelchair. I spent the majority of my time lying in a darkened room unable to do anything. When someone came over - if I was able I'd push myself to get up and appear 'normal', when I couldn't I was told that if I wanted to get better I needed to start exercising and stop spending all day lying in bed.

At that stage I still tried to push myself, tried to have a bath or shower when I wasn't able. Feeling guilty for not spending time with my son if I could get out of bed, no matter how exhausted I was or how bad my symptoms were I wanted to do something as a family - which inevitable ended up with more time in bed sleeping with increased symptoms.

We had decided not to have anymore children due to my health but I fell pregnant after an antibiotic interfered with the pill I was taking. Two doctors advised that I should consider having an abortion here on medical grounds - I refused. I had to stay on strong medication throughout pregnancy and thankfully our son didn't have any major affects when withdrawing from the medication.

My health has deteriorated further and I'm now bedbound with full time carers. I have communication sheets for when I wake up with paralysis unable to speak. I've problems with eating due to choking so live on meal replacement drinks. The only time I leave the house is for medical appointments, if they can't come to me. Due to orthostatic intolerance getting worse any outings for appointments are while lying flat on an stretcher taken by ambulance.

The old wheelchair I had is no longer suitable, I can't sit upright and don't have the strength to self propel any more. I'm waiting on a specialised tilt and recline chair and hope to be able to get out of bed again and spend time with my family. I want to be able to watch my kids play. My youngest son will be 2 in a few weeks and all he has ever known is mummy in a hospital bed in a dark room. I've never seen him on a swing or slide in the play park, my eldest son has had several hip hop shows with solos and learnt to swim, all of which I have missed.

Some people with M.E have their health deteriorate no matter how well they rest or pace themselves. For me, my health has got worse largely in part because I pushed myself to do to much and lived in a push crash cycle for so long. My determination to carry on regardless and not to let the illness beat me has resulted in me loosing any independence that I once had - being now completely reliant on other people for everything.

I know now that in order to be able to do more, we often have to learn to do less. M.E is different from other illnesses, trying to push yourself and get on with things no matter how bad you feel makes you worse. Giving yourself a hard time about things you can't do or listening to others who don't understand and tell you that you 'should' and 'need' to do more makes things worse as you are then feeling guilty and unable to rest properly.

I've met a lot of people with different severities of M.E, the only thing that I've heard that helps with M.E is pacing. Learning to balance activity with rest and not pushing your body to do things that it can't easily manage. Listening to your body and resting when you need to and trying not to pay attention to the people who tell you that you 'should' do more when your body isn't capable of doing so.

When my new wheelchair comes, I now know and have learnt that the only way I'll manage to be able to do more overall is by accepting that at times when my body is struggling - I need to do less!

Wednesday, 28 January 2015

How can others understand if we can't understand each other?

Sadly I've noticed that there is often a lack of understanding and empathy within the M.E community for others who are at a different level on severity scales for M.E. Over the years I've heard so many people who are severely affected complain about what they've read within general M.E groups.

That they are sick of listening to people complain about how awful they feel or exhausted they are after a day out or weekend away. People saying that those mildly affected don't know or understand how severe ME can be. 

Giving out that anyone with mild ME should count themselves lucky that they can get out and do things and should think about those of us who are severely affected, how our lives are and what we can't do! Do we as severely affected patients ever stop to think about someone with mild/moderate ME and how their lives are affected?

I'm severely affected with ME, I know and fully understand that it can be hard and often upsetting when hearing about things people have done or have enjoyed that you can no longer do yourself. Seeing posts and pictures of others with ME enjoying a fab break away when my biggest achievement that day may have been managing to get out of bed long enough for the bedding to be changed. 

I'm always glad to see such posts but at times it highlights the reality of my situation and the things I can no longer do now. I think this is the same for others within the severe category.

I think we need to try to understand each other within the M.E community and what life is like for those who fall into different categories instead of judging and criticizing - we all get far to much judgment and criticism of us and our illness from elsewhere! 

Also if some people mildly affected don't realise how severe ME can be why don't those of us severely affected tell them? As an M.E community we all want increased awareness and understanding. 

Those who are mildly/moderately affected are the people who are out in the community, if they have an understanding about the lives of those severely affected they can tell others how severe the condition can be when talking about their own M.E.


People with mild M.E don't experience the same severity of symptoms and problems as those with severe M.E however that doesn't mean their lives aren't severely affected by their M.E! 

When someone is moderately affected and may use a walking aid or wheelchair it's obvious to others who see them that they have problems and recognised that they aren't able to do the same things as those who are well. 

However people with mild M.E look fine to others when they aren't. People who don't understand the illness expect those mildly affected to keep up, not miss nights out, family engagements etc 

 Anyone with mild M.E is suffering greatly, they can often take part in things with friends, manage to work or do 'normal' activities that others in their lives enjoy but suffer later for it - however their symptoms are often dismissed and  unrealistic expectations are put upon them by others who don't understand M.E.

Today I write this from a hospital bed, I know that tomorrow and the days following I'm going to be lying in this hospital bed. I hope that my health improves so that I will be out of bed but at the minute I can predict I'll spend the immediate future in bed.

 Having become used to life in bed this is easy now to accept. Many people with mild/moderate M.E live in a push crash cycle where they do as much as they can when able and keep pushing their bodies to do more which then leads to an inevitable crash. 

They then find themselves in bed suffering with post exertional malaise and with major payback from their activities and the fact that they pushed themselves beyond what their body could easily manage.

I remember when I pushed my body like that and how the crashes felt, going from almost feeling like you had a semi normal life to suddenly feeling completely deflated being stuck in bed again with no idea of how long this crash will last. 

When people with mild/moderate M.E crash and are faced with uncertainty of when the crash will end, being stuck in bed can be very difficult to accept. 

Their level of ability can fluctuate from one extreme to the other unlike someone severely affected who has fluctuating symptoms but pretty much knows how they will be overall in the immediate future.

So for anyone who is severely affected and does complain about how lucky those with mild M.E are and how they should be grateful for what they can do and not complain after a hard day at work or when exhausted after a day out. 

Try to put yourself in their position or remember a time when you were. Did you feel lucky and grateful that you were able to do things when you had payback and felt so alone because no one understands and puts pressure on you to do things you can't? 

If you constantly had periods of being able to do things hoping your health was improving only to get shot down again and again when the inevitable crashes come would you feel happy that you could do things? Or frustrated that there was such hope and then total uncertainty?

Did you know then how severe M.E can become? When so few people in the lives of those with M.E understand or appreciate how hard this illness can be at any level - is it not understandable that when suffering from doing something people come to groups online to talk about how they feel with others who understand? 

When I was able to do things and existed by pushing myself I was aware of how severe M.E could be and even now, classed as 'very severely affected' I appreciate that my health and quality of life could be much worse and am very grateful that it's not.

If we want more awareness and understanding of M.E within the medical profession, family and friends, the media and general public - I think a good place to start would be within our own M.E community!

Thursday, 8 January 2015

Accepting Chronic Illness, not giving in - just accepting that life will be different!

Accepting a chronic illness or two as was my case with M.E and Fibromyalgia isn't easy, for many it can be completely overwhelming. Of course it doesn't help that half of the medical profession, family members and friends often don't believe that the conditions exist in the first place or think that it's 'all in your head'! 

In many cases the people who you would have assumed would be there to help and support you should you ever become ill aren't there for you and are often dismissive of the fact that you are ill or that there's actually anything wrong with you at all.

I found that accepting chronic illness is like going through the various stages of grief in no particular order and often jumping from one stage to another; shock, anger, denial, sadness, pain, feelings of helplessness, isolation, loneliness, and acceptance.

It makes sense with these illnesses that you go through similar feelings to those of someone grieving because you are grieving. Grieving for the person you wanted to be and life you wanted to lead but can't, 

feeling frustrated with yourself and the illness, angry and helpless because there's nothing that you can do to change things and this is not how you want things to be. 

Feeling alone and isolated because no one can help and no one in your life understands how you're feeling!

I think there's a similar path to acceptance for others in your life, whether it's your husband, partner, parents, kids etc. 

They are grieving too in a way, for what they have lost and trying to come to terms with how things are now and how the future and plans made will change because of the illness.

It takes time to come to terms with things and you need to give yourself the time you need to let yourself work through things and get your head around it all.

 It helps that there are plenty of online groups on Facebook with hundreds of people who understand what you are going through because they've been there themselves!

There are also plenty of organisations and charitied with information and support.

I found and still do that guilt plays a major role, guilt about what I can't do, what I 'should' be able to do, guilt from other people about what I 'should' be doing. 

I learnt over time that nearly everyone will have an opinion on what you 'should' be doing but just as you do, they need to learn to accept that you are ill. Accept that you aren't doing things because you can't and not because you don't want to.

 Realise that giving yourself a hard time for things that are beyond your control (or others doing that to you) isn't going to help you at all - in fact it will do the opposite and make everything harder!

Everyone reaches acceptance about illnesses at different times and like I mentioned above can go through various parts of the cycle repeatedly. 

I think it's important to remember that your loved ones are also going through a process towards acceptance and you may not all get there at the same time!

 
Just as there are groups for people with M.E and Fibromyalgia, there are groups and organisations for partners, carers and family of those with the illnesses where people will understand what they are going through too.


The best thing that you can do is try to build a support network, whether that's family, friends, groups online - just people that will be there when you need them! 

Find things that help you cope when you feel like you can't and that will help you to relax, a favourite show, audio books, meditation, doing crafts...whatever works for you. 

Trying to limit the negativity and stress in your life also helps, the people who insisted I wasn't ill no matter what myself,doctors or anyone else said are no longer in my life.

For a long time I thought that admitting I was ill, admitting that there were things I could no longer do, needed help with or aids to help was like giving up or giving in to the illness and letting it beat me. It's not giving up at all - just accepting that life isn't going to go the way you'd originally planned.

You won't necessarily be able to do the things that you had intended but it doesn't mean that you're giving up, quite the opposite in fact - you're just moving on and finding another way to live your life. 

A way forward that works for you and works with your illness, finding ways to adapt, setting new goals and finding other ways to accomplish some of the things you'd set out to do in the first place!


Your life isn't over because you've got a chronic illness  - it's just gonna be different!