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!
Yes September is here, the leaves are starting to turn, and there are Halloween decorations in the shops! It is my favourite time of the year, so much cosier and I absolutely love the relief of getting away from the heat of summer and the settling down of my symptoms.
As I usually do when there is a big change in weather, I have gone through my wardrobe and got rid of things…and replaced them with things from the sales! Usually I buy a couple of things and leave it at that but this time I have decided to change my style a lot more than I ever have before.
My style is usually grungy and hippy with not a lot of focus on what I wear because I rarely go out and even more rarely ever see anyone! However, after watching people on you tube who wear more of a vintage style and are confident enough to wear more feminine and less ‘fashionable’ clothing that can be found in charity shops and antique places.
Now I have always wanted to dress more 1930s-50s not rockabilly, but more authentic? However, I stand out a lot when I am in a wheelchair or using my walking stick and I kind of always wanted to hide away? Well no more!!!
If you watch my latest You tube video HERE then you will see some of the items I managed to get in sales to start off my collection. I am going to be thrifting and keeping my peepers peeled for cheap places to get this sort of clothing. I love that these pieces suit my hourglass shape more and they will not go out of fashion so I will be able to wear them without worry next year.
I have been changing things up a lot in my life recently and it feels so good to get motivated and get my style and our home looking more like we want it to. I feel so much more inspired and motivated, so maybe if you feel a bit stagnent it is time to clear things out and redecorate a room, or just donate some old clothes that you no longer wear?
Over the last month or so my depression has flared, I have had chronic depression since I was 14years old and usually I can battle it, but sometimes it just gets to be too much. I have often fallen into letting my depression take over and stop me from doing the things I love and enjoy. It can even stop me bothering to shower or clean my teeth and that leads to me just feeling even worse!
I have come to realise that this is how depression works, it stops you wanting to do the things that can help you to feel better. So this time I fought back and followed the following steps as a way to stop it taking over totally:
- Eat healthy food: It is easy to skip meals and snack on junk food when you feel depressed, but this time I used an app called Lifesum to track my food and to make sure that I am eating the right things and drinking enough water every day.
- Get enough sleep: Now when you are plagued with negative thoughts and worries sleep often stays away. I have found listening to relaxing music, or podcasts or audiobooks can stop you being able to think and allow you to relax enough to rest if not to sleep.
- Limit time online: These days this can be hard, but spending too long online, scrolling through social media etc, has been shown in many studies to contribute to depression. If you want to fight depression do not give it the tools to bring you down!
- Be kind to yourself: This means something different to everyone, but it does not mean shopping and eating! This means small things like taking a bath, using body creams of your favourite scent, having a little chocolate or watching a favourite movie.
- Fresh air: Getting out of the house for a short walk, preferably in nature if possible, can really help to ease your mind and help you to feel less like a blob on the sofa and more like a human who is struggling but fighting every step of the way.
- Plan your day: Every day plan a few tasks, no matter how small even if it is make the bed, wash my face, take a short walk. Keeping busy and feeling like you have achieved something no matter how small can make all the difference to how you feel about yourself at the end of the day.
- Be thankful: Every night as you get comfortable in bed, say to yourself three things you are thankful for, preferably one of them is about yourself. This helps you to be grateful for what you do have and to see at least one good thing about yourself that can poke through the negative thoughts.
These are the things that helped me, and the depression is now starting to lift off me thankfully. What are the tips and tricks you utilise when you feel depressed?
This week I wanted to talk about fatigue and how hard it can be to just want to get out of a warm, comfortable bed when all you want to do is rest. When you wake every morning in pain, your joints stiff, your head aching and every limb hurting on top of extreme fatigue it is so hard to want to get up and get your jobs done.
I spoke on this weeks Chronic Illness Video (HERE) about how fatigue feels, it is not just being tired, or how you feel if you couldn’t get comfortable at night so check that out if you think it is! Fatigue is deep inside extreme tiredness that makes it impossible to want to do anything.
Now if you have been reading my blogs for a while, you will know that I am a very motivated person and if I set myself goals I will do anything to achieve them. The problem comes, when your body is heavy and tired and you cannot think straight enough that you are still a person who wants to do things and be a human! You have dreams and goals and when day after day you are not well enough to achieve them that can be incredibly demoralising and depressing.
It has taken me a long time to come to terms with this, I have been sick since 2002 and I have just started to be able to do it! But, being patient and not letting guilt take over can be the first steps in accepting what you can and cannot do and then coming to peace with your illness and your goals.
In Buddhism, acceptance and peace are the main goals and applying that to my illnesses has helped me to relax that inner need to do the housework every day and do a yoga routine every day and take the dog out and cook healthy dinners and…..There will always be ‘ands’ but take a breath and remember that being the perfect person is not something we can ever achieve.
I am reading a book called ‘How to live well with chronic pain and illness: A mindful guide’ by Toni Bernhard and to quote her:
“The unrealistically high standard at work here is that we don’t think we should be chronically ill. Even though 130 million people suffer from chronic illness in the United States alone, we live in a culture that repeatedly suggests that, with proper diet and lifestyle changes, no one need be sick and no one need be in pain. When we’re not living up to what we perceive to be that cultural standard, we feel embarrassed.”
For me that really hit the nail on the head, it is society constantly telling us that we should be perfect, loved, and happy if we just eat the right foods, do the right exercise, everything will be sunshine and roses! But when famous people, who the press tell us are perfect and to be like them, are committing suicide, taking drugs and turning to alcohol to cope…can we really expect our lives to be perfect?
I think what I am trying to say is, do not let society make you feel less because you couldn’t do that load of washing, or you were in too much pain to walk the dog! Be prepared to have days, sometimes weeks even months, when all you can do is rest and do not feel less because you need to just sit.
My best advice is to use a slow cooker and have meals prepared in the freezer, have family help you to do things and do not let anyone ever make you feel less because I know you are fighting every day just to want to get out of bed and some days that is enough!
So this morning I woke up crying, I had slept passed my alarm and my pain was to a point where I was crying. It was so painful literally everywhere that I couldn’t move and I felt sick, I knew I needed my tablets and I knew I had to force myself to eat…not easy to do when you feel like this.
More and more I am finding my pain is breaking through my pain meds, and yes I have tried CBD oil but it makes me drowsy so it would still stop me doing things! When my pain is this bad it is almost impossible to contemplate yoga, and housework or anything other than laying still and trying not to cry.
A couple of weeks ago I had an appointment with a pharmacist to go over my meds and see where I can change things to make the pain relief better. Unfortunately, he said I was on the maximum medications and should not be having much break through pain so if I do to take paracetamol and if that does not help to get a referral to a pain clinic!
I have been to a pain clinic before and they were not very helpful, they said there was not much they could do for me which to be honest was a blow to me. I hate pain, it is so hard to want to do anything when you are in pain all the time. In fact, it makes me want to scream and cry, though I tend to hold it inside because I hate worrying people! Right now I am also having trouble with my ears which is affecting my balance and giving me pressure migraines and both of these things along with my chronic pain make me want to curl up in a ball in bed and never leave!
Now I have had chronic depression since I was 14 years old, and I can tell when my mood is dipping, tearfulness and wanting to hibernate are my biggest tellers and the things I look out for. So right now as I am avoiding talking to my online friends and wanting to be left alone to try to cope with this extreme pain I am trying to look forward, make plans to achieve my goals.
My goal is to be where I was two years ago, back then I was doing yoga, managing to do a little housework, take a shower, walk the dog on a short walk and then rest. This is all I want, so that is where I want to see myself again so I can contribute to keep up with the house, I can look after my doggy, and keep up my exercise.
To get there I am going to see if I can speak to my Dr tomorrow about:
- seeing someone about my migraines
- get referred to the pain clinic
- maybe get myself a referral so I have a specialist overseeing me regularly for my fibromyalgia like I did when my diagnosis was Multiple Sclerosis
Hopefully if these things happen I can start to get myself back to being the person I was and build up my strength, and get myself out of the depression hole I am starting to fall into!
Have you experienced this? Did you get anything out of seeing a pain clinic? What are your goals? I hope to get some advice and tips so leave me a comment.