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.
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 yesterday an old friend from school came round to see me for a cup of tea and a catch up. Now to most people this might seem very boring and not out of the ordinary at all but it meant so much to me and I want to explain why.
First of all, she got in touch with me because she found my blog, and when she did and started reading she was amazed at how similar our symptoms and experiences with chronic pain and fatigue were. She emailed me and we started to talk and arranged for her to come visit, and if you have been reading my articles for a while you will know how lonely I get so this was something I was so excited for!
I was nervous because of the amount of time that had passed since we had last seen one another, but I needn’t have. We chatted away and in no time found ourselves amazed at how similar our chronic illness journeys were and how we both have struggled with accepting our illnesses and having family understand why we are sick.
I started to think about all the chronic illness warriors that I know through social media, you tube and this blog and wondered just how similar our paths seem to be. It in incredible that no matter what our diagnosis, we all walk the same path and it is this fact that connects us all. I started to realise that so many of us are in reality so isolated and alone, spending weeks at times not seeing friends or even leaving the house just like me!
Seeing my friend was wonderful, I felt so tired and in pain afterwards but I have not stopped smiling since because I am so happy! I feel like I am part of a worldwide network of chronic illness warriors who have many different illnesses and yet we all walk a similar path! So if you ever feel lonely or just need to talk my instagram, twitter, facebook and my email all have ways to get in touch with me and I would love to connect with you!
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?
So as you might know, if you have been reading my blog for a while, I have been struggling with my depression for a while now. Our living room has felt cramped and clutttered for a while now and so me and my husband thought we would have a change. We cancelled Sky TV because we never watched it, and that meant the TV did not have to be next to the window like it always has been.
We donated some furniture and things and that freed us up to bring down Lee’s grandmother’s rocking chair and use some savings to get a couple of antiques. Now after a couple days of craziness in the living room the space feels bigger and calmer. We both love spending time in there now and nothing beats feeling relaxed and calm in your own living room.
Now it might seem strange, but I have also found my mood has drastically changed since the change round as well! I had not imagined it would make a difference, but honestly I do feel lighter and happier and I don’t know maybe the old addage ‘a change is as good as a rest’ is true?
Now I am not suggesting we all go around changing our whole lives around, but maybe now and then we need to take care of our surroundings:
- Pull furniture out and give it a good clean
- Declutter your space and get organised
- Donate any furniture or ornaments you are not attached to
- paint or recover old furniture to give it a new lease on life
- Get some new throw pillows or blankets/throws to brighten up the area
I hope this new brighter mood lasts, but even if it doesn’t I hope that I can always appreciate the things around me. Buddhism and Christianity teach that we should not hoard things or become too attached to them…maybe that is why I feel so much lighter now?
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?
I am feeling a little overwhelmed and tired, and it is all because I want to be able to be a person a normal person and I want to do things and get things done but my body feels so heavy and painful and tired! I sometimes feel like I am trapped in a body that does not want to do the things I do so it tries to hold me back and stop me from doing what I want to do!
For example, today has been a good day I have done a short yoga sequence, cleaned the bathrooms, had a shower and now I want to write and catch up on things…but now I am in pain in the back of my head, my shoulders and upper back. I also feel so tired I keep having to retype words because my hands will not do what I need them to!
Part of me thinks it would be easier to give up and live in a dump let myself get fat and my brain go numb watching daytime TV!!! However, I am not built that way, I need to learn and grow I need to keep on top of my body which is squishier than I’d like, but I can only do my best right?
So, I know this post is a little moany, but to be honest that is how I feel at the moment! My husband is struggling too I think it is the weather! In the UK right now it is cloudy, hot and the air feels heavy. This kind of weather gives me a lot of headaches and my pain is always worse when the weather is up and down like the typical British summer.
Now, if you read my blog regularly you might be wondering how I am going to get myself back to the positive again????
Well, I have thought long about this and I think I am going to tackle things in smaller chunks! I am going to spread my work out through the day so maybe 10-15 minutes three times a day instead of trying to do it all in one? Also, maybe break down my cleaning even more, so if there are a lot of ornaments in a room, maybe clean it over two days? Yes when pain and fatigue get’s overwhelming it can be easy to give up and yes I have a little weight to lose right now, but if I am patient and keep on fighting I can do this!
Yesterday was a big day for me, I love making new friends and going out, but when you have an anxiety disorder it can easily spiral into something you force yourself through instead of enjoying yourself.
I was going out with one of my best friends to celebrate her getting married, we first went out to learn to make cocktails in a really nice bar, and then to a different place to eat a lovely meal. We went out to a big city close to where we live, but it was still an hour each way on the train and walking from place to place though thankfully they were less than 5 minutes walking from one another.
I woke really early and was ready to go a long time before I needed to be, now this is normal for someone with an anxiety disorder. I was ready early because I didn’t want to make anyone wait or let anyone down. But waiting has it’s own problems because then I have time to worry and make up scenarios in my head. To combat this I watched you tube videos on my ipad, they are perfect because they are short and you can watch them without worrying too much about getting caught up in them.
I bought myself a new dress to help with my confidence as well, and though my dress was 1950s style I felt so pretty in it and not like I stuck out. I think that with a little make up really helped me to feel like I could hide if I felt overwhelmed, but my friend and her friends and family really were lovely and helped me so much! Even when a man in the bar made a comment about me looking like his mother because of my walking stick I managed to shake it off and just have fun!
I made sure as well to have a few drinks and to have fun, but to be careful not to go too far and to drink lots of water as I did so. I had such a fun time, I ate well and the best part was going behind the bar and making actual real cocktails! They all tasted so yummy and fresh and perfect for summer I could have stayed there drinking them all night!
The walking has left me with aching legs, however people walked at my pace and looked after me which I appreciated so much I have been left behind in the past and it does not feel nice at all! I also came home early before I was wrecked (thank goodness for adrenaline am I right?) and got straight into my pyjamas and got into bed.
Today I found my energy so low and my head is aching, my legs hurt, my feet are swollen and itchy, and overall I just want to sleep…but it was so worth it! I think going out with friends is just as important for mental health as meditating and I just wish I went out with friends more often!
The last year has been incredibly hard for me, I lost my Granddad, I had a flare of my fibromyalgia and my depression crashed down on me. I stopped really caring about how my house looked, how clean and tidy it was, I stopped looking after myself and just got lost in symptoms, and depression.
After recently seeing a psychic (HERE is a video about that) I found my depression and grief lifted and I started to realise that I wanted my life back. I might have constant pain, anxiety, fatigue and neurological problems, but I like my life and I am happy. I don’t expect a lot from life and all I want is to get back to daily yoga, meditation, and housework and to have enough energy to cook a healthy meal in the evening.
So how am I going to manage this when my flare has left me with more pain and fatigue though the worst of it has eased along with the depression. Well, if you have been following my blog for a while you will know that I am a planner, and this is how I am going to get my routines back.
I have my week ahead planned, I know what I am going to do and how, and that has left me feeling far less worried and overwhelmed. I have remade up my natural cleaning products and I am back to my determination to lessen the amount of chemicals in my home. I am hoping that with my new plans, my determined nature and lots of breaks I will be able to keep up with the daily routine I started today.
I woke up and took my medications at the usual time and then hit the yoga mat for a gentle 30minute practice, I then lay down and followed a 15minute guided meditation and then a short bible study. I then ate a yummy smoothie bowl and rested for a while before cleaning my living room. By the time I had done these things it was after 1pm and I was amazed at how long these few things took me, however I felt incredibly proud of myself for taking my time and listening to my body. After a shower, I came here and wrote this blog, I am hopeful that by breaking things into shorter tasks and being organised I can do this routine every day.
What I want to say is, life is hard with chronic illness, they grind you down and can become so hard to live with, but if you keep pushing and keep motivated you can still achieve your goals!