So I am on antibiotics at the moment and they are really making me feel awful! So I got up this morning and thought I would order Unrest on Amazon and give it a review.
Unrest centers around Jennifer Brea and her husband who are both intelligent and adventurous people who love travelling and as I put it ‘grabbing life by the balls’. Then Jen got sick with a virus and their lives changed drastically as she became sick with Chronic Fatigue Syndrome or Myalgic Encephalopathy. We follow her journey as she records her life, her struggles to cope with her husband becoming her carer, we see her interview other people with the illness all over the spectrum, and we see her husband caring for her.
This is a very raw documentary and I must have cried so many times while watching it because I saw myself and my relationship with my husband so clearly on the screen. This film shows Omar feeling lost and alone as he tries his best to support her, it shows him willing to try anything to help and it also shows that it is so hard to see someone you love suffer and not knowing how to help.
I was so moved by their stories, but it was when she spoke about the history of unknown viruses that cause chronic fatigue in the past that hit me hard. Hysteria especially was hard because it is clearly Chronic Fatigue when you see the old medical videos and photographs and yet these people were locked away in mental institutions and treated terribly because back then doctors thought it was all in our heads…
Then we hear about Karina, a girl whose parents cared for in their home in Denmark, then one day the police took her from her bed to be cared for by a doctor because they believe it is all in her head and her parents are making her sick! Yes these horror stories we like to think do not happen now really do and I know I am being treated like it is in my head by family and doctors!
Unrest is stunning to watch, moving in so many ways, it showed the good days and the bad, it showed the money we spend on made up cures because we get desperate and it shows that when family become carers it can make things so hard. I really found myself coming away from this film feeling thankful that I am not alone, that other people out there know how I feel and all of our stories are real and similar and if only doctors would watch maybe things could change for us all?
I really hope people get to see this powerful and important film, this illness and illnesses like it have been overlooked and hidden away for too long. So go watch the film online HERE is a list of where and how, share it and let’s stop hiding this illness and let’s get our stories out there so no more people go missing.
So a couple of posts ago HERE, I talked about how I felt the NHS had let me down because since my diagnosis was changed from Multiple Sclerosis to Fibromyalgia and Chronic Fatigue Syndrome. I have had hardly any medical intervention since then and have felt like nobody cared, this started me feeling depressed and lost and honestly I had stopped going to see my GP because I never got answers I wanted and I just put up with worsening symptoms.
So after thinking about it for a little bit, I sent an email to my doctor’s surgery with an explanation and a link to that post. I wanted to see if it would make a difference and I wanted to make sure that this kind of thing did not happen to anyone else. I suspected that I simply fell through the cracks of an already overstretched and underfunded NHS, but I am still a human and it was about time I needed to be my own advocate.
I heard back early the next day from the surgery manager who said they were very sorry about how I felt and the doctor wanted to see me. I got a phone call later that day and I have an appointment to discuss my concerns and hopefully get some of my symptoms treated and referred to the right people.
This really did reinforce for me that I am my own advocate, and though I know the NHS is given a raw deal by the government, and though I used to be on the other side, I deserve to be treated better. I read a lot of blogs run by other chronic illness warriors and I follow them on You Tube and I see the sort of treatments that they recieve and I have been given none of those options. So this week I am going to be researching and printing things off and taking it all to the doctors because I need more than I am getting.
So this was a big lesson to myself, but also I hope that it inspires all of you that if you are not feeling supported or well treated by your medical team speak up! I am going to be taking my husband with me to back me up and I am going to make sure together we are heard…nobody can speak up for you unless you try to speak up for yourself.
So if there is any research or treatments you think I need to look into leave me links in the comments and I will get researching!
Yeah my body right now is painful, my joints hurt, my head aches and I am struggling to get enough energy to keep up with the housework and overall this is what we call a flare! Everyone with chronic illness knows what I mean by a flare, it is when your symptoms get worse and new symptoms even sometimes come to join the party!
When this happens it can be very easy to feel like a useless, painful lump on the sofa and wonder why your loved ones put up with you. I often feel guilty that my wonderful husband has to help me and I can fall into depression which as a chronic sufferer usually gets worse too. However, by using logic and finding ways to make life fun, you can get through to the other side without spending every day crying and feeling like the world would work better without you!
- TV shows – I am a Netflix user and right now I am using my flare and bad fatigue as a very good excuse to marathon all those TV shows in my watch list. Right now we are on season 2 of Stranger Things which is absolutely amazing and we are very much enjoying The Crown! Spending time cuddled up with a loved one or an equally cool friend watching awesome TV really distracts you from the negative thoughts that can start crowding in.
- Logic – I find a great way to fight my depression is to use logic, so when the depression tells me I am useless I think about what a good friend I am and how when I am well enough I do housework. If it tells me my husband would be better off without me, I look at him and see how happy he is with me and how silly he is and it pushes it away. Using logic to counter every negative thought works really well and was something an old therapist told me to do.
- Plan your week – Being organised comes naturally to me and is something I have always done, but it doesn’t come naturally to everyone. One thing I suggest is planning your week, split your jobs or chores up into smaller jobs you can manage and do them spread out over the week. Yes this can be frustrating, but it is better to do a little every day than to try and tackle big jobs that either do not get done or defeat you and leave you feeling worse.
- Put things away – One thing that comes with high fatigue is the very real problem of using things and not having the energy to put them away. It can leave your home feeling crowded, untidy and overwhelming, it takes a lot less energy to put one thing away than fifty, so next time you need to get up to go to the toilet or something like that, just put things away and tidy up. Keeping my home looking tidy helps me feel better especially if friends or family turn up!
- Be kind to yourself – This is a hard one, but imagine you are talking to your best friend and she said that she felt really sick all week and hadn’t been able to do housework and she felt really guilty about it…now imagine what you would say to her…treat yourself like your best friend. Be compassionate and loving and caring to yourself and always have a treat in the cupboard for emergencies!
- You can cry if you want to – No matter if you do all these things there will always be days when nothing helps, so shout at your illness not your loved ones and let those tears out. Crying is really healthy and not a sign of weakness at all like our society likes to make out. Do not be afraid to put some sad movies on and let it all out trust me the next day will feel better if you do not bottle everything up!
I hope if you are in a flare these help you like they have helped me and I hope things settle down very soon. Please leave me any coping solutions you use when your illnesses flare up down in the comments I would love to find some other ways to help.
“I have been given this product as part of a product review through the 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. “
So I was sent the Quell a few weeks ago as I said, and it is a great little product so let’s get into the details of it. The website says that it stimulates sensory nerves, taps into the body’s natural pain relief response, sensory nerves carry neural pulses to the brain, and that they trigger a natural response that blocks pain signals. These are big claims and I think as anyone who has lived with chronic pain, I was a little sceptical but hopeful that this would help me.
The device itself is easy to put together, the electrodes are attached via two small connectors and there are 4 sections of blue gel that sit on the skin and that is how the device delivers the pulses to the skin. The device then is housed in a long strap which is always worn on the upper calf and it is kept in place with velcro.
The Quell is controlled by an app which is free from the app store and I added it to my phone. There you tell it about how your pain has been over the last 24hours and it uses that information to make sure you get the right amount of signal.
I found it really easy to put together and to use, the app is great you can change how strong the pulses are, and tell it how bad your pain is and it even registers when you sleep and how active you have been. Once it is on your leg it is comfortable and once you have the strap comfortably attached you can almost forget it is even there! I did find that the connectors came away from the unit a few times which meant I was not getting treatment, and there were times when I knocked it because it does stand out a little.
I also felt a little self conscious with it on, I wear a lot of skirts and having this black strap on my leg got people asking a lot of questions! I do wish there were other styles of strap, maybe in other colours just so you could coordinate with your clothing and make it look nice. Many of the pictures on the site show people wearing it to work out and I assume that is why these colours were chosen, maybe other strap designs will come in the future.
I did wear the Quell device to my yoga class and when I was doing my exercises at home, it made some postures a little difficult, but overall there were positions I could hold longer because I had the Quell on! It surprised me to find that, I honestly did not have high hopes but it really took away that dull ache that always seems to be there no matter what meds I take or what I try! I slept better with it on as well, it eased my pain to a point where I felt relaxed and it was great to find something that helped without it having to come from taking tablets!
Overall, this is a really good product, it is easy to operate, you can control the pulses and it is comfortable to wear and to sleep in! Most importantly of all it does control the pain and for me it is great support for the medication that my doctor prescribed me. I will for sure keep on using the Quell and would recommend it to anyone who suffers with chronic pain.
You can check out more information at their official site quellrelief.com
First of all sorry I needed to take a little break but it has to be expected when you run a blog with chronic illnesses! Also I had my PIP assessment which is to see if I qualify for a benefit here in the UK and the stress and worry from that has not helped!
However, here I am half asleep and frankly p***ed off!!! My fatigue has flared and I honestly feel like I am trapped inside my body! I try to keep up with my housework and to do things that make me feel human, like shower and wash my face and get dressed, but it is a constant battle! I wake up every morning after sleeping like the dead feeling just as tired as the night before and yet I have things I need to do on that day!
I find myself feeling so guilty when my husband is at work and I am just lying about doing nothing but staring into space. I wonder if he would be happier without me and if I am just a useless lump. Then I have to try and shake off the depression and try not to do an impression of Eeyore so I can hopefully pull myself out of this slump and get things done.
I wish I could say this will be a useful and positive post but honestly I am just fed up! I have things I want to get done, like my yoga practice and bible study and a little housework just like I could before and yet I feel so tired and my body feels so heavy I can barely think straight no matter get jobs done!
So instead of giving out tips and tricks of how I deal with things I am reaching out to the chronic illness community and asking for tips? Do you suffer with fatigue and if you do how do you make sure that jobs and goals do not just pile up while you nap? Leave me some comments here or on social media links are around let me know please? I need something to help before I go mad!
Summer is here in England, and as we Brits know that means it is hot, humid, stormy and can be raining in the morning, blazing sun in the afternoon and that night have a storm! The problem for us fibromyalgia sufferers is that means our symptoms start to shout and make themselves known and mine certainly are!
I have been having a lot of sinusitis, headaches, pressure migraines, burning pain in my arms and legs, and increased pain in my shoulders, upper back and neck…basically I hurt everywhere and the medications I am on from the doctors are not really helping anymore! Usually I would make an appointment to see someone and get my meds reviewed, but at the moment that is not really an option as getting an appointment means waiting about a month or begging and pleading every day!
So being typical me I hit google for alternative therapies and the one thing I have not been trying is supplements. The problem is as you can see from THIS LIST is that there are so many recommended for fibromyalgia how do I know where to start? I am feeling very lost and overwhelmed and wishing I could win the lottery so I could maybe have all the latest treatments and get rid of the daily pain!
However, as that is not really an option I have ordered two books from Amazon one is From Fatigued to Fantastic and Pain Free 1-2-3 both by Jacob Teitelbaum. I got them used and they are coming from the USA, but by getting them second hand I am saving almost £25!! I am someone who does believe in Western medicine, afterall I was a nurse before I got sick, but honestly I feel like it is letting me down and I need to take control of my own health!
When I was wrongly diagnosed with Multiple Sclerosis I had a psychiatrist, a neurologist, physiotherapy, accupuncture, even people to cut my toe nails so that I wouldn’t hurt myself while unable to feel my feet. Now I have a different diagnosis all of that has gone away, and it is really hard for me to get in to see my GP. My symptoms however, have not changed and I sometimes feel like I have been kicked out and left to deal with it all by myself. Well if that is the case I am going to study and get my symptoms under control by myself I am not going to let it beat me!
So readers, what alternative therapies do you use? What have you tried has has or has not worked and are there any books that have helped you?
I was a qualified nurse before I got sick, but even I have to admit modern medicine has kind of let me down! I am constantly told I am on so much pain relief they do not know what to give me if it gets worse. On top of that I was not diagnosed with anything for five years, and then ten years after that I was told I didn’t have Multiple Sclerosis and it was Fibromyalgia instead!
So I have been looking into alternative therapies this year and to be honest it is…well overwhelming! It is almost impossible to know where to start and there is so much information out there it is almost impossible to know where to begin and what is genuine!
Thankfully I have yoga, that has been my exercise for years now and though I still use it as my exercise I also use it for symptom management. I found bedtime yoga can help my muscles relax and my head to calm ready for bed. I have found routines for headaches, for muscle cramps, and it opened up a world of treating my body my moving it instead of resting all the time to try and treat myself.
On top of this I have meditation, I am still learning how to do it alone, but Yoga Nidra and guided meditation on you tube are brilliant. They are just lying and listening while focusing on breath and it helps my mind to let go and my body to relax. If you have not tried meditating you are really missing out on something that can really help.
However, then I got a little lost and for a few months I did not know where to turn, the internet is a great resource but also a little overwhelming! So I went on Etsy and looked up Fibromyalgia wondering if there was anything people were selling could help and I found THIS
It is a massage oil that has lots of herbs and essential oils in it and you just rub it in where it hurts…it is amazing! I used it on my arms and the pain and cramping just melted away! I really felt relaxed and it smelt so wonderful I just cannot say enough about it. On top of that I got the balm which helps with joint pain which I get a lot in my hands and it is so soothing and really nice to use. If you have fibro I would certainly recommend them!
Lastly CBD oil it is cannibis without the illegal drug bit! I thought it was illegal here, but it turns out that it was made legal in January here in the UK and so when I saw a sign for it in my local health food shop I rushed in there! I chose the lowest dose and I just use it under my tongue at night to help with my pain and insomnia. I am spending much less time napping since I started it and I also found my anxiety has lessened by using it!
The question I pose now though is where do I go from here? I know I want to save for a diffuser, but what alternative therapies do you use? Are there any must have oils or books that would help me? Please comment me links to books, purchases and articles as well as any advice you might have?