So as I sit here writing this I honestly don’t know how I feel about having two new illnesses diagnosed. On one hand it is great to have some answers and to have a plan, but on the other I wanted it to be something they could cure you know? However, I wanted to give you all a health update because I feel like you guys know so much that I need to get this out there.
So over the last few months I have seen a headache clinic, and had MRI scans, and seen two rheumatologists. On Wednesday I went to see a new physiotherapist who confirmed that the consultant thought I had a type of arthritis called Spondylitis in my upper spine and neck which is why I get so much pain and stiffness.
She also told me that I have a form of Ehlos Danlos Syndrome called hyper-mobility EDS and will need long term physiotherapy and occupational therapy in order to keep my joints working. I potentially will need a brace for my one thumb and she explained that as long as I work on improving my muscle I should see improvement in the stability of my joints.
I came home feeling overwhelmed and since then my depression has dipped a little and I don’t think it is because of the diagnosis. I mean it is a good thing to know I will be looked after long term, though not by a rheumatologist by the physiotherapist. I don’t know why it has shaken my depression up a bit, I guess it is just a lot to take in to know that I am going to have this pain and these are potentially both illnesses that can get worse.
I think for right now the thing that has upset me the most, is that I cannot do the type of yoga I love or go to yoga class anymore because it will not help my joints. I am feeling down about that, but I will still be doing yoga with Sleepy Santosha on You Tube so that is a good thing! I am determined not to let this news get to me too much so I have things planned to try and keep my spirits up, like getting my hair cut tomorrow and going to my friend’s murder mystery party next week!
So there we are, now you know why I have been a little like a hermit but I am going to be moving forward with a lot of gentle exercise, and working on improving my diet so I can be as healthy as this body allows!
Last month was pretty hard for me, I lost my grandmother and I turned 40…yeah I did not appreciate that!
I got a little lost in everything, grief kind of took over and I stopped doing a lot of the things that I love. I stopped practising yoga, I stopped eating three meals a day, I stopped looking after myself and I was miserable! I was feeling overwhelmed with grief and I kind of shut down because I couldn’t process everything that happened in such a short space of time.
I was starting to think that would never clear away and that I would be stuck with my depression at a new higher level. I was considering going back to my doctor to get my antidepressants raised, but I am very disillusioned with doctors right now. I have been depressed since I was 14years old, and I have had fibromyalgia and ME since I was in my early twenties and nothing has changed doctors still just throw tablets at me instead of trying to find out why I hurt and how to treat that…but I digress!
So I was thinking of making an appointment and then April came along…
This month felt different, I started reading again, and I got hold of a copy of Medical Medium, I also finished the Heal Chronic Fatigue course I have been doing since January 1st and you can see my videos about that here. The course really started my interest in alternatives to western medicine and I am enjoying the journey that I have started on. I honestly think looking into nutrition and natural remedies might be the way forward to getting some relief.
So now my depression flare has lifted I feel like I can get back to things again, updating this blog weekly, and my You Tube channel twice a week. I did yoga this morning and managed to dust the living room, and though I am sore and tired I feel accomplished. It feels good to do the things that make me happy again and though I know this new way of looking at my illnesses will take time and research and I need to be patient with myself, but I am excited!
So let me know in the comments any tips and tricks or books I should read? I am going to be documenting this journey as I go both here and over on my You Tube so make sure you are subscribed to both so you don’t miss out when I update.
So first of all I want to apologise for not updating my blog for a week or so, unfortunately I needed a little time to look after my mental health after losing my Grandmother. She was a big part of my life, in fact I think I talked about her in my last post and I am finding the grief hard.I have taken losing her and my Grandad pretty badly because they were two people who taught me so much and loved me so completely and without conditions.
It is horrible because I have moments where I forget they are gone and I get a idea to call or suggest we visit, but then I remember…
I think anyone who is dealing with grief knows that feeling, like hearing it all over again, and right now it is hard because the funeral isn’t until the end of the month so that is looming over me. Added onto that I have my birthday this week, I am turning 40 and most people I wanted to celebrate with me cannot make it and I think I just have a lot of feelings from childhood parties gone wrong kicking up again!
I think a lot of people who suffer with anxiety and depression know this well, something happens and instead of just wanting to deal with that one thing your brain decides to think of a million other times in your past. Negative thoughts and memories are something I deal with every day and something that I honestly fight with and battle with constantly. Most people who met me would not think that, but even as I smile inside there is a million thoughts and feelings fighting to take that smile away from me. I am in the process of starting therapy again, finally after a life with Generalised Anxiety Disorder and Depression since the age of 14 the doctor thought I might need long term therapy wow never would have thought it!!
Opening up to someone new about your past and the issues you have leaves you feeling so exposed and raw, so losing one of my close family at the same time has been very hard. I think it is hard at any time, but talking about it along with retelling my past has left me feeling very small and lost at times.
I really hope however, that I can push through this time in a healthy way and this is how I am going to try and do that:
- Talking – I think it is important to be open and honest about my thoughts and feelings at the moment and I am talking things through with my husband and therapist because I cannot hold this all in.
- Meditation – I try to meditate every day to protect myself and to keep my mind clear, it gives me a chance to slow down and just concentrate on my breathing. I also found some amazing guided meditations for grief on You Tube.
- Mindfulness – Staying in this moment and not getting lost in emotions and thoughts is something that does not come easily, however I find it helps my anxiety, which is thinking about the future, and depression, which is thinking about the past. I have been working on this because I am a Buddhist, but it is also a big part of what my therapists have suggested.
- Keeping busy – Now this one can be difficult with pain and fatigue, both of which are worse because of the grief, but it is important to at least be reading or watching a TV show sitting and thinking is the worst thing for someone suffering with their mental health so definitely bear that in mind.
I hope this post has not bought you down or upset anyone, but I think far too much in our society we are afraid of death and talking about mental health issues and right now that is what is happening in my life. Yes it is difficult, but the more we talk about it the less stigma there will be and more people will be able to get the help they need without worry or fear. Next Monday I will tell you all about my wonderful birthday celebrations and hopefully I will cope with turning 40 without running away hehe
So if you have been following my blog and you tube channel you will know I am currently doing HEAL CHRONIC FATIGUE COURSE and though it is set up as a six week course I have taken a little longer over the middle weeks. This is because it deals with nutrition and how we often think we are being healthy when we actually are being lied to by companies who use far too much sugar and salt and far too many chemicals!
I have been trying to find a healthy diet to follow for years now, but getting reliable information is so difficult! Just a simple google search will show you just how much emphasis there is on low fat and being thin rather than being healthy!! I have tried so many times but now I am even more determined because after reading what Zoe, who runs the course, says I want to be feeling as well and able to do things as possible.
Since starting the course, I have found myself able to do gentle yin yoga, a little light housework and shower every day which was impossible before! I am working hard to make sure I am getting enough sunshine, breathing fresh air, not relying on electric lamps too much and taking time off the ipad/phone and I am feeling better for it.
Nutrition is the last part of the puzzle, but where do I start??? Budget is a big factor, so I want to start making my own cereal bars and snacks, baking, and making our own bread…but so much is still confusing and hard to navigate. I am working my way through the food I already have in my home as I hate food waste, but as I run out I am making it a mission to replace each thing with a healthy alternative.
This is the only way I have found to navigate this HUGE minefield and to try and actually get good food that is not full of chemicals and sugar! I feel like as a whole diet is hard to understand for me, brain fog makes it hard to understand and I have memory problems that mean it is hard to remember a lot of information.
So one at a time I am going to replace the rubbish with food that has totally readable ingredients or that I have made myself, it is a scary and slightly daunting task but I want to do it. I want to reduce my symptoms as much as possible so I can be the best person I can, so I can keep up with housework and be a partner to my husband instead of someone who depends on him.
What are you doing to eat healthier? Do you bake and cook everything from scratch? Is there a specific diet that you follow? Let me know down below any help is most certainly appreciated!
So this week has been pretty interesting and a little bit of an experiment that I am actually pretty excited about!
So on Wednesday I got to see a headache clinic for a chat and to find out if there was anything could be done for my daily headaches, and weekly migraines. He was the first specialist I have seen for a while who did not make assumptions because I had chronic illnesses but just wanted to help my pain. He listened to everything I said and seemed pretty shocked when I said I had been suffering since I was at university!
I have never been offered any specific medications or other options to treat them so we had a good chat and decided that some nerve blocks might help as well as a couple of medications to take if a migraine hit me.
A nerve block is when local anaesthetic is applied to a group of nerves to block pain, most people have heard of an epidural during labour and it is a type of this. I was nervous, but my best friend has this treatment for her Fibromyalgia pain in her upper back so I knew it could give excellent results.
I thought he would refer me to someone to do this treatment as we were in a doctors office, but he did it there and then! It was strange having injections into my head, I had one at the base of my skull on the right side and one above my left eye in my scalp, and I could hear the needle against my skull which was so weird! He also injected some steroids into my left jaw joint right by my ear which he said was swollen and not opening properly which explains a lot! I felt a bit bewildered as I left, a bit shaky, but overall and most importantly very thankful! I could not stop thanking him for listening and for helping me which seemed to puzzle the doctor but he understood I hope.
The next few days were hard, the pain from the injections was quite bad and I spent the next couple of days in bed resting and feeling quite fragile! Getting comfortable on my pillow was not easy and even now on day 5 I feel like if I move my head too fast it will be painful, I guess because the headache is still there but the signal cannot get through? Still it is so nice to not have a headache and to feel like my head is clearer so I can think a bit better.
I am going to be seeing a Rheumatologist soon so I am going to suggest it maybe for my neck and upper back pain and if it could be done together I might find myself pain free for a few weeks at a time? I know it is wise to be careful and not get my hopes up, but when you have been in pain for so long with nobody really listening it can be nice to have a little glimpse at something that could help!
Have any of you tried this pain therapy? Has it helped and would you recommend it? Let me know in the comments because this is something I am quietly excited about!
So a couple of weeks ago I posted THIS post, in it I spoke of how I feel let down since my diagnosis was changed from Multiple Sclerosis to Fibromyalgia, Chronic Fatigue Syndrome, and neurological problems they did not look into. I felt strange doing it, but I sent the surgery a link to the article and soon was called to see the doctor to discuss it.
That appointment was yesterday and I really do not know how I feel about how it went!
They listened to me and referred me to people to try and help I have been referred to a rheumatologist to hopefully take over the care of my Fibromyalgia. I have also been referred to have ultrasounds on my shoulders to check what is going on and why I am getting so much pain and cracking with them.
I have also been referred to a therapist, I think because of my chronic depression which has flared, but I wonder if they are thinking some of my symptoms are in my head? She did say at one point that Fibromyalgia is a ‘dumping illness’ that is used when no other diagnosis can be found and that it cannot be cured.
I sometimes feel as if Doctors being scientists are only interested in illnesses that can be cured or measured. As my illnesses are mainly causing me extreme pain and fatigue neither of which can be cured or measured they really do not know what to do with me!
I sit here before you frustrated but slightly hopeful, maybe something will be found that they can latch onto and that will get me the help I want. Or maybe who I have been referred to will know the latest research and will know how to deal with my neck and shoulder pain which causes headaches and pain without just throwing medication at me???
I will keep you all informed as things progress, I am unsure what to do about the fact the doctor prescribed me Morphine for pain and feel a little disappointed that something else was not suggested…still I am willing to try anything at this point and cling to the hope that next year will bring me some good care.
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.
So this is a difficult thing for me to say, I was trained as a nurse in the NHS and I worked with them for a couple of years before I got sick. I love that we have a national health service that is free on point of contact, anyone here can be seen and treated for any health condition without having to worry about how to pay. I hate that the Conservatives are starving it of money and resources but I hope that it can be saved because healthcare should not be something you forego because of the cost!
When I first became sick I was treated for an infected insect bite, but honestly they did not know what was wrong or why my left leg was numb and painful. I was referred to many doctors before I was diagnosed with Multiple Sclerosis in 2005 if memory serves. I saw therapists, MS specialist nurses, physiotherapists and I had a neurologist who treated me as well. I injected myself daily with medications, I had times in hospital, MRI scans, and a lot of support from my GP.
Then in 2015 I was called in to see my neurologist who told me that I had been misdiagnosed and though I had neurological problems they would discharge me as it had been too long and they couldn’t look into it. So I was once again lost without a diagnosis, however my GP suspected Fibromyalgia and referred me to a rheumatologist who diagnosed me officially with fibromyalgia, but I have not seen that doctor since.
In the time since then I have not had a main doctor who has been a specialist and looked after me, I have seen physiotherapists a couple of times, and though I have been told by a couple of different people they suspect early arthritis of some kind I have not been referred to anyone. My migraines and headaches that are almost daily now have not been treated though I have told my GP about them, and I have asked to be referred to someone to be in charge of my illness and treatment I am still waiting.
I feel incredibly depressed and as if nobody cares, I am in constant pain, fatigue that leaves it impossible for me to do housework or gentle exercise daily, headaches leave me exhausted and I honestly hate it! I have all the same symptoms, if not more now than I did back then when my diagnosis changed and yet my treatment has gone from feeling supported and cared for to nothing. I feel as if nobody cares in the NHS that I am suffering and crying in pain at some point most days…and yet we do not have the money to go private it is not even an option.
I have no idea what I am meant to do in order for them to listen and care for me again, I am sick and tired of being so useless and lost and all I want is something more than more medications thrown at me. I feel let down by the NHS, either because of bad management or just lack of understanding about this complicated illness…but whatever it is I am left here feeling depressed and wanting to get a little of my life back so I can maybe help my husband more and feel like a functioning and worthwhile human, is that really asking too much?
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!