Fear of the unknown – leaving my protective cocoon.

 

I have a hospital appointment coming up. It’s for a painless, straightforward heart scan (Echocardiogram) as a follow-up to my recent heart problems. Now this would be a simple activity for a healthy, able-bodied person but for someone with a disabling chronic illness like ME/CFS it becomes a huge undertaking. Added to the physical stress involved with such a task, is the mental strain placed on my body from the amount of planning and problem solving I have to do, and the anxiety this causes.

Routine is vital for someone who suffers from cognitive problems caused by ME/CFS and also for people who suffer from anxiety. Healthy individuals cannot comprehend the stress and exhaustion triggered by attempting new activities outside our normal routine. When I leave the protective cocoon of my bedroom I enter a world which is out of my control. My room has been adapted around my illness and the limitations placed on me. But when I leave this safe environment I encounter so many obstacles and scenarios which can damage my health.

When you suffer from a serious chronic physical illness, new situations bring with them a lot of obstacles. Change, however small, can trigger a worsening of our symptoms like pain and fatigue. Basic tasks are exhausting for someone with ME/CFS so the added physical activity of travelling to hospital and having a heart scan, is like a healthy person running a marathon. One of the main symptoms of ME/CFS, called post exertional malaise (PEM), means that even once I return to my well-adapted environment I suffer the consequences of this new activity, often for days or weeks. And the fear of not knowing how severe the crash will be or how long it will last, adds to my apprehension.

Not only is the outside world out of my control, it also harms me. The world is a busy, smelly, noisy place. When I venture outside I am met with an onslaught on my senses – a sensory overload. It feels like a million people are shouting at me from all directions. It’s not just painful and exhausting – it’s terrifying.

Added to this, I have my anxiety to contend with. When you suffer from anxiety, routine is your friend. Even the notion of change can trigger a panic attack. When faced with a new situation my mind races out of control trying to find solutions to every possible problem and outcome that may occur due to the change. When you have a chronic illness the amount of possible problems multiples, therefore anxiety levels also multiply.

I have to plan every little detail. I have to think about every possible scenario and “what-if” to try to minimise the damage caused to my health. It’s inevitable that attending this hospital appointment will cause increased pain and fatigue, so it’s not just my anxiety at play here. There is a real danger that this simple activity will trigger a crash that could possibly last for days or weeks. But, if I’m honest, my anxiety also plays a big part the deterioration of my health with situations like this. This mental stress is just as exhausting as physical activity

So, I spend the days and weeks running up to hospital appointments planning every little detail. I ring the department I’m visiting and explain my situation. I have to arrange hospital transport because I cannot sit up in a car. I pack my hospital bag including sunglasses, ear defenders and medication. I have to plan for my return and rearrange my bedroom accordingly. I have to plan for the inevitable crash that will follow and the limitations this will place on me on the days following the appointment. I have to try my best to rest on the run-up to the appointment in an attempt to conserve some energy.

And then there’s the seemingly endless amounts of “what-ifs” I feel the need to plan for. What if hospital transport doesn’t turn up? What if they can’t find my key safe to let themselves in? What if my health is so bad I’m unable to communicate properly? What if there are complications and I need to stay? What if they decide to run more tests? What if I get so dizzy I pass out? What if my appointment is late and hospital transport decide not to wait? What if my scan is cancelled? What if I need the bathroom but I’m too weak to stand? What if I have a panic attack and there’s no one around to help calm me? What if I’ve forgotten something really important?

Other people’s lack of understanding about ME/CFS, and this includes medical professionals, also add to my stress levels. I have to use my limited energy repeatedly explaining why I need to lay down, why I’m wearing sunglasses, why I can’t tolerate noise etc. It’s frustrating because people don’t understand the damage their actions can cause, and quite how traumatic it can be.

I will be travelling to this appointment on my own, without the support of my husband or a family member. I will be at the mercy of strangers – hospital transport staff, nurses and doctors; people that don’t know me or the often crippling symptoms my ill-health causes, and the limitations this places on my ability to function. I don’t look sick – I look like a “normal” healthy individual. Will the strangers who I am entrusting with my care understand the seriousness of my condition? How will I cope without the back up of my loved ones and the safety net they provide. If I’m honest, this is probably the scariest part of the whole scenario for me.

Feeling apprehensive about change or a new situation is completely natural and we all feel it to some degree. We are generally creatures of habit and change brings an element of the unknown. But for someone with a severely limiting condition like ME/CFS this fear is multiplied tenfold.

I cope with this fear and anxiety by planning every little detail, but I also have to accept there are some things (a lot of things in fact) that are out of my control and no amount of planning will help. Would my time be better spent resting and letting other people take control? Maybe, but my anxiety would not allow me to do this, and the stakes are too high for me to leave this in the hands of strangers who do not understand my condition. In the end, I have to remind myself; I have been in a similar situation many times before and I’ve survive every single occasion, I will survive this too.

Do you suffer from these fears? Does leaving your familiar protective environment damage your health and fill you with dread? How do you cope with change and new situations?

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10 Spoonie tips on how to survive a heatwave

The prolonged hot and humid weather we have been experiencing over the past few weeks, or is it months now?, has been challenging for everyone, but the discomfort is magnified when you have a chronic illness. If you have limited mobility and are confined to your bed for long periods of time, it can be hard to stay cool. Many people with chronic illnesses face problems regulating their body temperature and the heat also increases our heart rate, which can add to the distress experienced.

As I have explained before, I really struggle in the hot weather. Anything above 20 degrees C causes dizziness and palpitations, but I have picked up a few coping strategies over the years. Here are a few tips for keeping cool during a heatwave:

1. Reusable Ice packs.
Hug them, lay your head on them, place them on the back of your neck – or all of the above. I have 8 in total, I even have a dedicated mini freezer just for my ice packs. Please remember to wrap them in a piece of cloth or tea towel so the ice pack doesn’t burn your skin.

2. Wet flannels.
I always have a cold wet flannel draped over the back of my neck, and I sometimes add them to my wrists. This really helps me cool down and reduces dizziness.

3. Oscillating Fans.
I have a number of fans in the house and during the summer one fan is on 24/7. The breeze from an oscillating fan can cool your body down directly but it can also increase the airflow in your room. During the really hot weather try adding a container of ice in front of the fan, this will actually cool down the air immediately in front of the fan.

4. Cooling towel.
I discovered cooling towels (they are sometimes called ice towels) a few years ago. You wet them and squeeze out the excess water, and magically they are ice cold.  They stay cold for some time but you do need to wet them regularly. I place a cooling towel on the back of my neck, my head, or just draped over my body.

5. Cooling mat.
Cooling mats are quite popular for pets but as I spend most of my time confined to my bed, I decided to give them a go. I find they do help me stay cool but during the extremely hot weather my body temperature warms them up quite quickly. You can also buy cooling blankets.

6. Air conditioning unit.
This year, fed up with constant dizziness and palpitations during the summer, I invested in a portable air conditioning unit – it was the best £300 I have ever spent. It is quite loud, so due to my hypersensitivity I can’t have it on all the time, but it has been a lifesaver in our recent prolonged hot weather.

7. Keep windows and curtains closed during the hottest parts of the day.
I actually have blackout blinds which block the direct sunlight and heat from the sun. Blocking out direct sunlight can prevent your house from becoming a furnace. Keeping windows closed during the hottest part of the day also helps reduce the temperature in your house.

8. Open windows during the coolest parts of the day.
First thing in the morning and late at night, open all your windows and doors, these are the coolest times of the day. I have to admit I don’t sleep well during the summer, but my favourite time of the day is 4-5am – it’s the coolest time of the day and I open every door and window available.

9. Water spray bottles.
Fill a bottle with cold water and spritz your face and hair regularly. This will cool you down, even if only temporarily. If you sit or lay in front of a fan, the additional breeze will cool you down further. You can also buy cooling mist sprays. If you are able to, try having a cool shower or bath.

10. Stay hydrated.
This one may sound obvious but staying hydrated during hot weather can be challenging for those severely affected by chronic ill-health. I have multiple water cups in easy reach of my bed which my carers refill regularly. You could also keep a water jug or a few water bottles in the fridge, or even the freezer. Ice lollies are another way of staying hydrated and they also cool you down.

I know it can be tough surviving long hot summers when you have a chronic illness, but there are ways to reduce the stress and discomfort you experience. Try to avoid any unnecessary activity and wear lightweight, breathable clothing. When I overheat and my heart rate increases, I tend to get anxious which can lead to a panic attack – a nightmare in extreme heat. So, try to stay calm and practice activities that reduce your anxiety levels, like meditation. I hope these practical tips have helped. Take care x.

Do you have any tips you would like to add?

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Let me introduce myself

My name is Jo Moss, I am 43 and I have struggled with poor health all my life. After years of tests I was finally diagnosed with ME/CFS in 2006 and later with Fibromyalgia in 2013. I am hypersensitive to everything and intolerant to most prescription medication, so it’s been a struggle to find anything to ease my symptoms and to make my life bearable. Rather than helping, the side effects from the cocktail of drugs my GP and consultants have prescribed has actually worsened my health.

In addition to severe ME/CFS and Fibromyalgia I have also been diagnosed with osteoporosis, IBS, anxiety and panic attacks, depression, migraines and insomnia. My health deteriorated so badly that I had a full mental and physical breakdown about 5 years ago. I have been virtually bed bound since and desperate to find something to help with my crippling pain and anxiety. I have been suicidal many times as I couldn’t see the point in going on if this was what my life was to be like, life didn’t seem worth living. But I’m still here and every day that goes by I feel physically and mentally stronger.

Reading that back it sounds so depressing but the reason I’m writing this blog is to give other people, who are in the same position, a bit of hope. My life isn’t easy but it is worth living. I may cry a lot but I also laugh a lot. I may get depressed but I’m also optimistic. No matter how bad things seem right now they will get better. You can take back control and give yourself hope for your future.

I must add that I probably wouldn’t be alive today if it wasn’t for the love and support of my amazing husband, family and friends. Thank you.

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‘Postcode lottery’ claims over treatment for ME

The following article appeared in the Eastern Daily Press (EDP) on the 26th July 2018. Written by Geraldine Scott.

“Postcode lottery” claims have been made over treatment for myalgic encephalomyelitis (ME) in Norfolk and Suffolk, as one sufferer said variations in care had left her angry and abandoned.

Jo Moss, 43, from Norwich, was diagnosed with ME 12 years ago. She described feeling like she had been “missing behind closed curtains” ever since and said: “Like millions of others I live my life from one darkened room, I rely on carers for even my basic needs and I feel isolated from the outside world.”

But she said the illness had been made worse by not having access to treatment she said would give her “hope for a better future”.

Dr Luis Nacul, director of the CureME research group, presented clinical commissioning groups (CCGs) in Norfolk and Suffolk a proposal in 2016 for a cost-neutral consultant-led service.

The recommendations were accepted by CCGs in Suffolk.

However in Norfolk and Waveney those with ME are offered between six and 10 therapy sessions before being discharged back to their GP.

But Mrs Moss said this left those who were severely affected, and often bed bound, without care.

She said: “How can [the CCGs] justify making a decision that denies severely ill patients treatment that could dramatically improve their quality of life, and reduce their pain and suffering, especially if this treatment was at no extra cost to the service currently provided?”

She said the current system left “no support for the long term ME patient”, and added: “I have been left to cope with this devastating illness on my own. I am virtually bed bound and I suffer debilitating pain and exhaustion on a daily basis, yet I do not receive adequate or consistent care.”

Mrs Moss had already complained to the CCGs, but she said she would also like representatives to visit her at home to “see first-hand the impact severe ME has on [her] life”.

She added: “I don’t think they realise the impact of their decision on ME patients like myself. Access to treatment shouldn’t be a postcode lottery. Having specialist care from Dr Nacul would mean I wouldn’t have to battle this debilitating illness on my own like I have been doing for many years.”

It is estimated that around 250,000 in Britain are affected by ME, and for a large number the impact is life-changing.

A spokesman for the Norfolk and Waveney CCGs said: “A specialist ME/CFS service is in place to support patients, provided by East Coast Community Healthcare.

“It offers an outpatient service via face to face appointments, email, telephone and, in a small number of cases, home visits. The team is made up of GPs with specialist interest and knowledge of ME/CFS and specialist therapists including occupational therapists and physiotherapists.

“There have been ongoing discussions with people living with ME/CFS about the scope of the current service, and the CCGs will continue to ensure the views of people affected by ME/CFS are taken into account.

“NICE, the National Institute for Health and Care Excellence is planning a national consultation about management of ME/CFS. This is also something the Norfolk and Waveney CCGs would need to review and consider collectively in due course.”

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‘Missing behind closed curtains for 12 years’ – Woman describes living with ME

The following article appeared in the Eastern Daily Press (EDP) on the 6th May 2018. Written by Geraldine Scott.

Living from one darkened room, relying on carers for the most basic of needs.

That is the reality of every day life for one Norwich woman who suffers with a condition which is described by some as ‘living death’.

Jo Moss, 43, was diagnosed with myalgic encephalomyelitis – more commonly known as ME – 12 years ago and said it felt like she had been “missing behind closed curtains” ever since.

She said: “Like millions of others I live my life from one darkened room, I rely on carers for even my basic needs and I feel isolated from the outside world.”

It is estimated that around 250,000 in Britain are affected by ME, and for a large number the impact is life-changing.

The most common symptom is extreme tiredness.

Mrs Moss said: “I had been ill for years before being diagnosed with ME. Every GP I visited, begging for help, blamed my poor physical health on depression and anxiety and just prescribed antidepressants or anti anxiety meds – I was even diagnosed with PTSD by one doctor.

“I was finally diagnosed in 2006 by a new GP who had just transferred from the local ME clinic to my doctors surgery. She was great and referred me to the clinic. She was very supportive but sadly, she left soon after.”

Mrs Moss, who worked in finance, said at the clinic she was taught pacing – how to balance activity and rest to help manage ME – and was given a course of cognitive behavioural therapy.

And they also wrote to her employer to explain what ME was.

“I was still mobile at the beginning but my health continued to deteriorate due to a lack of treatment and support,” she said.

“And stress was brought on by having my health benefits removed. I was assessed as 100pc fit to work at a time when I could barely function or care for myself. I had to appeal and go to tribunal, which took 18 months, it was so stressful and exhausting – it broke me. I have been virtually bed bound now for 5 years.”

She said subsequent doctors had not been as supportive.

“I had one doctor tell me ‘your fatigue is caused by over sleeping’ – apparently sleeping too much causes ME. I had another GP tell me ‘if you don’t get out of that bed soon, you are going to die in that bed – sooner rather than later’ – I sobbed for 2 days.”

“Before I became sick I had a very active social life. I’m a rock chick who loves live music, dancing, singing, laughing and drinking with friends. I miss this so much, I even have vivid dreams where I’m singing so loudly I wake up with palpitations. My subconscious mind still craves stimulation even if my physical body cannot tolerate it.”

Now, Mrs Moss has started a blog to reach out to others suffering but she said it was also an opportunity to regain her voice – especially next week, which is ME Awareness Week.

She added: “I have gone years without a voice, hidden away in a darkened room – forgotten, missing.”

A spokesman from the ME Association, said: “ME is real. It’s devastating. It leaves people, at best, struggling to work. At worst, it leaves them enduring a tortuous existence, a living death, where they are unable to take their place in society. The ME Association campaigns to make the UK a better place for people with ME.

“People are taking their lives because they cannot bear the torture this illness brings. This is a completely unacceptable situation for a disease costing the UK economy around £3.5billion in lost taxes, healthcare and benefit costs.

“There is no cure – and the longer it will take to find one unless funding dramatically increases.”

• To read Mrs Moss’ blog, visit www.ajourneythroughthefog.co.uk

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Inside the isolation caused by ME/CFS hypersensitivity.

I find hypersensitivity one of the hardest ME/CFS symptoms to cope with as it can be so isolating. Hypersensitivity comes in many forms: hypersensitivity to light, touch, noise, smells, vibrations, foods, medication, chemicals, heat, cold and irritants like pollen and dust. All of these things can cause pain, nausea, fatigue, headaches and migraines. The slightest stimulus heightens our senses and causes palpitations, sweats, tinnitus, dizziness, chest pains and difficulty breathing.

The only way to avoid this pain, and the scary symptoms that accompany hypersensitivity, is to avoid contact with the stimulus that causes the harm – this is the isolating part. I have no option but to live in a darkened room. I have to avoid noise, strong smells and touch from loved ones. My sense of smell is so acute at times, I can smell a bar a chocolate from the other side of the room – not the best superpower but it’s quite impressive. My diet is so restricted and I am unable to take most prescription medication which may be able to relieve some of my discomfort. Loud noises like fireworks are unbearable and traumatic.

But the world is a busy, smelly, noisy place. If I have to leave the protective cocoon of my room for hospital appointments, I am met with an onslaught on my senses – a sensory overload. It feels like a million people are shouting at me from all directions. It’s not just painful and exhausting – it’s terrifying. My heart races and I feel like I’m going to collapse – I want to run and hide but I freeze on the spot, terrified. The pressure builds up in my head, I feel like it’s going to explode. It’s frustrating because people don’t understand the damage their actions can cause, and quite how traumatic it can be.

Imagine a life spent avoiding human contact because you are too scared of the consequences. Imagine a life where the softest touch from your partner causes you to flinch with pain. Imagine a life where your care workers perfume makes you so ill you are unable to function for hours. Imagine a life where you fear sunlight and spend your days hiding in a room darkened by black out blinds (I used to read books about vampires all the time – now I have become one). Imagine a life where you have to wear earplugs even in the most quiet environments. Imagine a life where you can’t watch TV or listen to your favourite music because it’s too painful and exhausting. Imagine how isolating this life is – it’s very easy to feel alone and forgotten.

I have always been a very sociable person. I used to thrive in busy environments and I loved being surrounded by large groups of friends. I was always the life and soul of the party, but now this scenario feels me with sheer panic. I miss human interaction. I miss being surrounded by friends, I miss being carefree.

So the next time you visit a friend who suffers from ME/CFS, please consider what you are bringing into their environment. If possible, don’t wear perfume – even your washing powder could cause your friend harm. Lower your speaking tone down a couple of notches. They may be too sensitive to give you a hug or to tolerate any physical contact, so please ask first. Be prepared to sit in the dark while you chat. And please, no sudden movements – these can set of the same symptoms. But most importantly, please do NOT avoid visiting or speaking to your friend just because you are afraid you will cause them harm. We still crave human interaction and your visit could give them the mental lift they need to fight another day. A few adjustments in your behaviour can make a big difference.

When my best friend comes to visit me she always leaves saying; “I feel so bad, I know I have exhausted you”. Yes, it will take me days to recover from her visit but the memory of her smiles, stories and kind comments will last much longer. Feeling “normal” even just for a few minutes is often worth the payback. Human interaction is vital for our mental wellbeing and it helps us to feel less isolated and alone.

If you are someone that regularly visits a friend suffering with ME/CFS – thank you, your presence will mean much more than you will ever know. Take care.

I know hypersensitivity and sensory overload are symptoms of other medical conditions too. Does anyone else experience hypersensitivity? If so, what form does it take? What coping strategies do you have?

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Newspaper article highlighting inequalities of care for ME patients

 

I’m in my local paper this week (EDP), this time highlighting the lack of services for ME patients and inequalities of care.

I’m sure you are all aware how angry I am about Norfolk CCGs decision to reject an offer from internationally respected ME specialist, Dr Luis Nacul, to provide a biomedical consultant led care service in the Norfolk area for moderate and severe ME patients; Even though, a feasibility study carried out, determined that Dr Nacul’s service improvement was ‘cost neutral’.

I have sent a letter of complaint to Norwich CCG and contacted my local MP, but I also approached my local paper. I’m really pleased they are helping me highlight this issue.

If you live in Norfolk and would like to help me make a stand I have written a post about how to complain to your Norfolk CCG including a template letter.

Please click on the following link to read the article:

http://www.edp24.co.uk//news/health/postcode-lottery-me-1-5625734

 

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WEGO Health Awards – vote now

I have been nominated for the WEGO Health Awards!

I’m honoured to say I have been nominated for the Wego Health Awards in the ‘Best in show: blog’ category. These awards seek to recognise Patient Leaders who are making an impact with their advocacy. I have no idea who nominated me, but thank you!

Can I ask a favour please? Could you click on the link and vote for me please. It’s really easy to do; just scroll down to ‘endorse Jo – A Journey Through the Fog’ (under my photo). Thank you.

https://awards.wegohealth.com/nominees/14246

The WEGO Health Awards were created to celebrate those patients who actively support the mission of WEGO Health: to empower the patient voice.

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11 Strategies to Combat Negative thoughts and Emotions.

 

This is a post I wrote especially for ProHealth’s Inspirational Corner and it first appeared there on the 3rd July 2018.

“Self compassion is simply giving the same kindness to ourselves that we would give to others”

We often talk about the physical symptoms we have to deal with when living with a chronic illness but we often shy away from discussing the negative, raw emotions that surface too. Anger, resentment, frustration, grief for your past life, self pity and desperation, are all emotions we face on a daily basis. But the hardest emotion I find is guilt. Guilt for having to constantly ask for help even when my husband is exhausted from working long hours, guilt for having to cancel plans at the last minute when I’m not well enough, guilt for not being strong enough to emotionally support my loved ones, guilt for not being able to cook for my husband, guilt for being emotionally needy, guilt for not having a smile on my face when I’m in pain, guilt for not being the life and soul of the party, guilt for all the things my husband is missing out on, guilt that I can’t be the woman he married. That’s a whole lot of guilt for one person to be carrying around.

I have always enjoyed looking after my husband, I know it might sound old fashioned but I always felt pride in cooking for him and keeping a nice house. I have always been in charge of the household finances and been emotionally strong and independent. Don’t get me wrong, I’m not the sort of person who spends hours each day cleaning and I’ve always had a full life, but I took pride in these things.

But that all changed 5 years ago when I became virtually bed bound due to severe ME/CFS and fibromyalgia. My physical and mental health had been deteriorating for years but rather than accept my limitations and rest, I did what many of us do and tried to push through. I hoped by ignoring the signs and fighting on, I could somehow beat the illness. I fought for years before I finally admitted I wasn’t coping and needed help.

So, the tables turned. Not only could I not look after my husband anymore, I couldn’t even look after myself. I couldn’t clean, I couldn’t be an emotional support for my husband, family and friends. I needed help with personal hygiene, I couldn’t even shower myself without my husband’s help. I hated having to ask for help. This was a huge shift for me and a big change like this brings a multitude of negative emotions – I often feel inadequate, selfish, a failure, pathetic and full of guilt.

Fortunately I’ve discovered lots of tools to challenge these difficult thoughts and emotions, they’re still a work in progress but I really want to share:

11 strategies for combating these negative thoughts and emotions.

1. Self compassion.

The biggest and most important strategy I’ve discovered is learning how to show myself compassion. Having compassion for oneself is really no different than having compassion for others. To have compassion for others you must notice that they are suffering. Having compassion also means that you offer understanding and kindness to others when they fail or make mistakes, rather than judging them harshly. And when you feel compassion for another, it means that you realise that suffering, failure, and imperfection is part of the shared human experience. We need to find a way to show ourselves the same compassion we show offers.

2. Prioritise your health and happiness.

It’s easy to get down on yourself and feel like you aren’t worthy of being the number one focus of your own life, but sometimes, you’ve just got to devote some time to your own needs, hobbies, and enjoyment. It helps you feel balanced and appreciated in the rest of your life, which can only be a good thing. I’ve spent so much time apologising and feeling bad about asking for help that I’ve often forgotten about my own needs and feelings. I also often forget that I didn’t ask for this either, it’s not my fault I’m ill.

3. Communication.

I hide a lot from my loved ones because I don’t want to worry or burden them, but this is often counterproductive. By bottling up our emotions they grow and become much bigger problems – we give them power by shutting them away. I’ve found that communication makes a huge difference. Talk to your loved ones about how you are feeling, they may be feeling negative emotions too, they may feel they don’t do enough, or feel frustrated that they can’t take away your pain. Talk to your support network, whether that’s friends online or in real life, about how you are feeling, we are often so self critical, a bit of perspective can achieve a lot.

4. What would a friend tell you?

One tip that has really helped me is asking myself what a friend would say. We spend so much of our lives talking negatively to ourselves. If a friend was experiencing these same problems and negative emotions, what would you say? Write a letter to yourself, but imagine you’re writing it to a friend. What would you tell them about what they’re doing? Would you say they weren’t good enough or that they’re not worthy? No, you wouldn’t. Chances are you would be supportive, encouraging and positive.

5. Positive affirmations.

When I pay attention to how much strength it takes just to survive, and I focus on how far I have come and what I’ve achieved, I find it easier to let go of my negativity.

You need to realise you are worthy, you are a good person and you have a lot to offer despite your poor health. On a day when you feel emotionally stronger, spend a few minutes writing a list of your strengths. If you don’t feel able to do this, ask a friend to do it for you.

Spend a few moments each day reading this list and thinking about what makes you unique, what you bring to your relationships, what makes you a good person and what makes you worthy of love and compassion.

6. Do things that make you happy.

When you live with a chronic illness the limited energy you have is normally used up carrying our practical tasks like washing, cleaning etc. We feel we ‘should’ prioritise what we perceive to be essential chores but this often does not leave us with the energy to do the things we enjoy. Having fun, smiling, laughing, spending time with friends and relaxing are essential for our wellbeing.

7. Rest and restore.

These negative emotions often arise when we are physically exhausted – fatigue makes everything harder to deal with. Concentrate on being kind to yourself – rest and find ways to heal yourself.

8. Acknowledge your life is tough.

I try my best to remain positive but sometimes life throws too much at me and I become overwhelmed and exhausted. It’s at times like this that guilt sets in – I feel weak, I feel like a failure, I feel like a burden. My emotions take over and my mental health deteriorates. But the truth is – I’m not weak and neither are you – we just have a lot to deal with.

9. Focus on your abilities, not your disabilities.

To alleviate the frustration that often accompanies a chronic illness I try to concentrate on what I can do rather than what I can’t do. Acknowledging my abilities rather than focusing on my disabilities has been very liberating and is an excellent tool for enhancing well being and self worth. It also helps to reduce negative emotions.

10. Acknowledge your feelings are valid.

Although these negative thoughts and emotions are exhausting and often represent a warped perception of reality, we need to acknowledge they are valid. It’s completely understandable, given the challenges of poor health, that you experience these frustrations. Please don’t beat yourself up about feeling this way.

It’s perfectly natural to spend time grieving the life you have lost, it’s a vital part of the healing process. We often forget the importance of acknowledging grief and when we don’t give ourselves this time to mourn, anger and guilt can take over.

11. Remove self blame.

This is a big one for me! It’s not our fault we are ill and it’s not our fault we need to ask for help! The limitations our poor health places on our lives need to be acknowledged. We need to accept them and encourage those around us to accept them too. Let’s commit to stop blaming ourselves for what is out of our control.

When these negatives emotions rear their ugly heads, the best thing we can do is cut ourselves some slack. Be kind to yourself – show yourself some compassion. Rather than beat yourself up, try to rest and find ways to heal yourself. By focusing your energy on self love and compassion you bring a calmer, more centred person into your relationships.

But please don’t forget; It’s ok to feel overwhelmed, it’s ok to feel sad or depressed, it’s ok to feel angry about your situation, it’s ok to cry, it’s ok to ask for help, it’s ok to admit you are not coping, it’s ok to have bad days – you are only human. Take care.

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How to submit a complaint to your local Norfolk CCG

In this post I will explain how to complain to your Norfolk CCG about their decision not to commission specialist services for ME patients. I have included the contact details for all Norfolk CCGs and a copy of the letter of complaint I have sent. I am happy for anyone to use my letter as a template; just copy, paste and make the necessary edits. I have highlighted the areas that require edits using brackets.

You don’t need to be an ME patient to submit a complaint; carers, family and friends of ME patients can also get involved.

I have detailed the reasons why I’m submitting a complaint, and why I urge you to do the same, in this post (Please take a moment to read this post)

  • You can submit a complaint via your local CCGs website under the ‘complaints/compliments’ section or you can post your complaint to address shown below (see Norfolk CCGs contact details section)
  • You can either write your own complaint letter or use mine as a template.

 

COPY OF MY LETTER OF COMPLAINT:

[To: Tracy Williams (Chair)]

NHS South Norfolk Clinical Commissioning Group, Lakeside 400, Old Chapel Way, Broadland Business Park, Thorpe St Andrew, Norwich, NR7 0WG.

[Date]
Complaint Re: ME CFS Services in Norfolk.

Dear [Tracy Williams.]

I am writing to you to register a complaint regarding:

1. [Norwich] CCG’s decision not to commission a biomedical consultant led service from Dr Luis Nacul (respected ME specialist) for moderate and severe ME patients living in Norfolk.

2. The lack of services available for moderate and severe ME patients in the Norfolk area.

I have recently discovered that all the Norfolk CCGs had an opportunity to commission care from Dr Luis Nacul (an internationally respected ME specialist) but they rejected this offer. Norfolk CCGs decided they would not pay for the new service with the consultant, and one CCG also said there was a “conflict of Interest” when Dr Nacul offered his services for a “cost neutral solution”. All Norfolk CCGs have consigned ME to a “minor community service” and it will not be allowed to be discussed in public nor are minutes released from their clinical exec.

What makes this decision even worse is that in his feasibility assessment Dr Nacul determined that service improvement was cost neutral. https://t.co/j2EGXPdb7Q

How can [Norwich] CCG justify making a decision that denies severely ill patients treatment that could dramatically improve their quality of life, and reduce their pain and suffering, especially if this treatment was at no extra cost to the service currently provided?

[As a severe ME sufferer who has lived in Norfolk for 35 years, I am deeply saddened and angered by this decision. I have felt abandoned over the years by the NHS due to lack of specialist care, lack of provisions for severely affected ME patients and inadequate knowledge and understanding about ME by medical professionals within the NHS; I have been left to cope with this devastating illness on my own. I am virtually bed bound and I suffer debilitating pain and exhaustion on a daily basis, yet I do not receive adequate or consistent care.]

For years we, ME patients, have been told that a significant barrier to improving care was the lack of specialist expertise. Dr Nacul delivers this expertise in spades but his services have not taken up by Norfolk CCGs – can you please explain why? Also, why has ME been consigned to a “minor community service” – I can assure you, these services are not minor to the thousands who are affected by ME.

As you are aware, Dr Nacul leads the CureME Team at the London School of Hygiene and Tropical Medicine. The team is driving research for the recognition, diagnosis and treatment of ME and CFS.  Dr Nacul and his team are experienced, compassionate and committed to research into ME and CFS. The CureME team runs the ME/CFS Biobank which has included the collection of samples and clinical data from patients, including the severely affected, across Suffolk and Norfolk. We need Dr Nacul and his team’s expertise, our lives depend on it.

The current therapy led service provided by ECCH provides no support for the long term ME patient, or indeed the severe/housebound ME patient. This leaves large numbers of us, possibly several thousand, in the Norfolk and Suffolk area in a state of neglect. I want to know what steps are currently being taken to remedy this situation. It was also recognised by the JHSC back in 2009 that the therapy led service was inadequate and did not provide ME patients with the parity of care offered
to patients of other neurological conditions such as Multiple Sclerosis and Parkinson’s. When is this going to be remedied?

It is over 10 years since the service development process began and it has been clearly established what patients want from their local service.  Significant inequalities of care remain. The inadequacies of service provision in Norfolk and Suffolk need to be addressed.

I look forward to hearing from you.

Yours sincerely

[Name]

[Address]

[Email]

 

  • Once you have completed your complaint letter please send a copy to your local CCG using the contact details below.

NORFOLK CCGs CONTACT DETAILS:

Norwich CCG:

Chair: Tracy Williams

NHS South Norfolk Clinical Commissioning Group, Lakeside 400, Old Chapel Way, Broadland Business Park, Thorpe St Andrew, Norwich, NR7 0WG.

All Norfolk CCG complaints are dealt with at a central office, so the address is the same for all four.

Or email: https://www.norwichccg.nhs.uk/your-health/complaints-concerns

West Norfolk CCG:

Chair: Dr Paul Williams

NHS South Norfolk Clinical Commissioning Group, Lakeside 400, Old Chapel Way, Broadland Business Park, Thorpe St Andrew, Norwich, NR7 0WG.

Or email: http://www.westnorfolkccg.nhs.uk/contact-us/complaints

North Norfolk CCG:

Chair: Dr Anoop Dhesi

NHS South Norfolk Clinical Commissioning Group, Lakeside 400, Old Chapel Way, Broadland Business Park, Thorpe St Andrew, Norwich, NR7 0WG.

Or email: http://www.northnorfolkccg.nhs.uk/comments-compliments-and-complaints-0

South Norfolk CCG:

Chair: Dr Hilary Byrne

NHS South Norfolk Clinical Commissioning Group, Lakeside 400, Old Chapel Way, Broadland Business Park, Thorpe St Andrew, Norwich, NR7 0WG.

Or email: http://www.southnorfolkccg.nhs.uk/contact-us/compliments-comments-concerns-and-complaints

Great Yarmouth & Waverney CCG 

Email: http://www.greatyarmouthandwaveneyccg.nhs.uk/page.asp?fldArea=4&fldMenu=1&fldSubMenu=2&fldKey=449

  • Please copy in to Norfolk Scrutiny officers as well (email complaints)maureen.orr@norfolk.gov.uk   

    timothy.shaw@norfolk.gov.uk

  • You can also use Twitter to voice your complaint. I have been Tweeting my local CCG about this decision but I haven’t received a response yet. Please feel free to put pressure on them. I have been tweeting this:

“@NorwichCCG I’m a severe ME patient living in Norwich. I’m bed bound and suffer daily with debilitating pain and exhaustion. Can you please tell me why you declined the opportunity to commission care from Dr Luis Nacul that could have greatly improved my quality of living?”

“And can you please tell me why you have consigned ME to a “minor community service” and will not allow it to be discussed in public nor allow the minutes released from your clinical exec. @NorwichCCG #pwME #myalgice #ChronicIllness #MyalgicEncephalomyelitis #mecfs”

Don’t forget to to tag your local CCG:

@NorwichCCG @SouthNorfolkCCG @WestNorfolkCCG @NorthNorfolkCCG

CONSIDER CONTACTING YOUR LOCAL MP.

I have also written to my local MP, Chloe Smith (Norwich) and my local paper (Eastern Daily Press) If you feel able to, please consider doing the same.

THANK YOU.

We need to show Norfolk CCGs that this decision is not acceptable, and that the current services available for ME patients in Norfolk is inadequate. Thank you for reading this and I hope you can find the energy to get involved. I understand how exhausting activities like this are, but we need to make our voices heard. Thank you.

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