Time To Talk

It has been a while since I have posted. I have been struggling over the last few weeks. Although today (a Thursday) is not the usual day I post (a Sunday) I felt it would be a good day to upload something as it is Time to talk day. Time to talk day is part of the time to change initiative aiming to end stigma that surrounds mental health.

Talking about mental health is important. Starting a conversation with a person can have a huge impact. Starting a conversation with a person can be a step towards spreading awareness or ending stigma. More importantly, it benefits the person you are listening to. There is some truth in the old saying, “a problem shared is a problem halved.” Starting a conversation can change a person’s whole world. That might sound like an exaggeration, but the smallest thing can make the biggest changes. Talking to a person about mental health can remind them that they are not alone, it can give them a new perspective, it could potentially give them reasons to live.

I used to hold in my feelings, bottle them up. I didn’t like talking to people about my ‘problems’. I have people in my family that encourage not telling people personal business. I’m sure the saying is something like, “you don’t want to air dirty underwear”, that has been passed around. Not only that, but the advice tends to be “just get on with it.”

 

I have learned that bottling up my feelings is not good for me. Pressure builds and as an outcome, I break. I think this is why I am fairly open about what is going on in my life now.

Don’t get me wrong, there is a lot that has happened in my life that is too painful to talk about at times. There are things that I do not want to talk about or don’t feel ready to talk about. All that being said, mental health is a thing that I fully believe should be spoken about. I know it’s hard. I know it’s hard to open up. I know the physical pain that can be felt from talking about things that you’ve pushed down deep. I know the confusion of trying to put feelings into words. I know the shame that can be felt from thoughts you have, reactions you have or the physical signs of what is going on.

However, I know I have people in my life who I can talk to. I know the people I can contact and talk to about anything, with no judgement only love and support. They might not fully understand what I am going through or what I am feeling, but they remind me I am not alone. They remind me of the good in the world and they provide me with hope. Hope that things can change. Hope that this feeling is not going to last forever. Hope for the future.

Find more information about the time to change campaign at https://www.time-to-change.org.uk/

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Tips For Appointments 

If you have a chronic health condition or are being tested for one chances are you have umpteen different appointments. Sometimes you have so many that it’s difficult to know who you are seeing, when and what for. Below are a few tips that that could hopefully help.
Make a note of the time, date and location somewhere that you regularly look

If you are attending different appointments and having various tests and/or check ups then it is important to try and keep on top of them. It is important as it means that you are up to date and have some kind of idea of what is happening with your body. Having any sort of idea of what is happening with your body can feel rare when you have a chronic condition, especially if there is little known about it. Also, often if you miss an appointment you can get removed from waiting lists which means you need to go through the stress of getting referred again to go back on the waiting list.

If you have multiple appointments or even if you can be a bit forgetful or get things confused it is good to have your appointment written out somewhere as a reminder. I recommend having a reminder somewhere that you see a lot. I have my appointments on the calendar and saved in my phone calendar. I check my phone calendar on a daily basis. I find writing it on the calendar helpful as the whole household know about my appointment so someone is likely to mention it too.
Have a plan on how to get there

I struggle a lot with making plans for journeys. I have no real perception of time of distances. I have help with my appointments. My sister accompanies me to a lot of appointments. If she can not come with me she drops me off. Other family members and my best friend have done the same for me. If I have to go myself, I always ask for help on deciding when I should leave the house, letting them estimate distances and journey times. I do that no matter how I am travelling to the appointment. It doesn’t matter if I am going to be walking, driving, getting a train or getting a bus, I am asking somebody else to help me make some kind of arrangement to get to the appointment.
Have somebody with you

If it is possible it can be useful having a person with you to support you at your appointment. It means that somebody is there to witness what is being said which is useful if you are likely to forget or if you have fear surrounding that appointment. Some places will help try and arrange someone to come in with you if you have to go yourself eg. If you tell my doctors surgery when you book in that you need somebody in your appointment to support you they will arrange for a staff member to come in to your appointment with you.

As I have already said above I have been accompanied to appointments by a few different family and friends.
Make a list

It is my experience that when you attend an appointment so much is spoken about that it is easy to not say everything you wanted to say. An easy way to fix this is to write a list and then you have a physical reminder with you of topics you want to bring up. When I have a doctors appointment my sister sits with me and will write out a list with me with everything I want to tell the doctor. This list will have everything from symptoms, reactions to medication, when appointments with consultants are scheduled for listed. In fact, she has titled a list “Sarah’s Issues” that she wrote out for me to take to a doctors appointment. I have found myself at appointments and just handing over the list for the medical professional to read through straight away. It gives me more peace of mind knowing that I am telling the doctor everything I wanted to tell him.
Have important information written down 

If you are in an appointment yourself it can be useful to get the person to write down important information or instructions that you should remember down. It especially helps when you are attending an appointment that you are given a lot of information.
Tell people about it or write it down

It is useful to write down a short summary of what happened at your appointment. I’m not saying write a fully essay on it or anything! Just a short summary, even if it’s just a short sentence. It makes it easier when discussing treatments with other medical teams or if you are applying for benefits.

Likewise, I also do not mean to tell everybody about your medical business. Tell your partner, friend, anybody of your choosing how you got on. It is good for the person who cares about you to know how you are doing. Also it is nice knowing that you are not alone through it all.

For me, I have a tendency to overshare. However, it is usually with people that I trust and I want to know how my health is and how it is affecting me (I only use the word ‘usually’ here as I do make this blog quite personal so could possibly overshare). Having loved ones know about my health makes me feel less alone and it makes me feel like somebody cares (which is important, especially with an invisible condition). Also, I know that if something serious was to happen to me or I had to be hospitalised somebody would be able to give a rough account of what has been happening health wise in my life. This is something I worry about a lot and it might not be the cheeriest thought but it puts my mind at ease knowing that somebody else knows.

This short list is just a few things that I find helpful regarding appointments, and I’m sure there’s many more tips out there. Feel free to leave a comment or any tips that you might have.

No New Year New Me

It’s the start of January 2018. January is a month that people tend to start things – diets, plans, projects. A lot of the time its “New Year, New Me” that you hear being called out, everywhere.


Now I’m not saying I’m perfect, or don’t need to make changes in my life or lifestyle. That is the furthest thing from the truth. I just don’t buy into the “New Year New Me” ideology.


I understand it’s a new year. I understand that there’s already a mark of something new. I understand that the year ending and a new one beginning tends to make people reflect upon themselves, their year and their life. I just don’t think that the ‘old’ you disappears and you become this ‘new’ self. I think that you learn something new, try something new or make a change and then work through the potential challenges. I also think these changes become part of you rather than a full makeover.


The usual kind of resolutions are:

  • Go to the gym more/ Do more exercise

  • Eat less sugar/fatty food

  • Procrastinate less

  • Find a partner

  • To have our life sorted out

This is only a very small example of the usual kind of resolutions that people make. By the end of January new year resolutions have usually ‘failed’ or been forgotten about, usually until the year is ending and they are recycled again for the following year. It’s stressful.


I’ve said before that I am sure that everybody is just trying to feel their way through life and I still stand by that. I think these changes can be made at any time and not just new year and these changes and experience become part of you or play a part in making you who you are, and not magically turn you into a new person. I think that these changes are part of your growth and self development as a person. That being said I understand why, to a degree, that the phrase “New Year, New Me” is used. If people don’t like something about themselves or want to change something about themselves then they want it to disappear or instantly become different.


If I had to have a new year’s resolution, I guess it this:

I would like to continue on my journey of self development and growth. I would like to have a year full of love and laughter with my nearest and dearest and maintain my current relationships. I want to keep trying. I want to keep trying to see the good and positive aspects in situations, in people and in life.


The idea of completely changing myself is appealing in some ways but realistically I know that it’s not going to happen. All I can do is keep on. Keep on trying and keep on feeling my way through life.


*picture credit: I found the image on Google

Happy New Year 

The new year is fast approaching. It’s in 6 hours time in the UK at my time of typing this. I got a card from my best friend with a wee message in it and it is also my wish for all of you!

“I hope you have a 2018 that is filled with love, laughter, progress, happiness and good things!”

I hope the year ahead brings joy for you all and your loved ones. I hope you find progress in everything, whether that be health, savings, relationship problems, uni, college, school, work, that project you started. I hope that progress is made. I hope the year is full of rich experienced that will become memories that bring you joy forever. I wish you happiness, I wish you the ability to find the good in things and spread that happiness about. I hope you have a million reasons to smile. Wherever you are, however you are bringing in the new year, I wish you all the best for 2018.

It’s been a while….

It has been quite a while since I last blogged. Very nearly a whole month to be exact. I have just not been able to do it. I have not been feeling very well lately, at all. If you know me, or have been reading my blog you will know that I find a lot of things difficult but I have been trying to be more positive about things. I have been trying working on my health (my physical health, mental health and emotional health) and my general wellbeing. Like everything else on my journey, I was succeeding in some aspects and not so much in others. That is until last month, when I feel like I just hit a wall.

At the end of September the pain nurse advised a change in medication as the one I was on did not seem to be doing anything for my pain, but just giving me a bunch of side effects. Some of which were very difficult for me to cope with. So I had to decrease those tablets (let’s call them Tab A) and then start taking and increasing another tablet (Tab B). I was then taken off of Tab B after a short time as I had a bad reaction to them. So I was to start again – decrease Tab B to then start and increase Tab C. However, I also had problems with Tab C as I was taken off of a tablet I have been on for over a year to go onto this new one. So while I was coming off of Tab B, and starting Tab C to then increase that dosage, I was having to decrease the pill I have been on with the aim of coming off that one. All medication has side effects so I’m sure you can imagine the effect that all these medication changes have been having on me. As well as this treatment plan I have been issued other tablets to try and help me sleep. I stopped taking them though as they made me feel worse. No lie, my bedroom shelf is starting to look like a pharmacy! My GP told me that I was going to “be in for a rough few weeks” with all these medication changes so I knew it was going to be challenging.

Even with the knowledge that the changeover of medications was going to be difficult, I still took it quite hard. I have been very cold, but then very hot, the pain has increased, the little motivation I had disappeared, my appetites changed, my skin has changed, I’ve been emotional. Most days I stay in the house, usually in my bed. I feel like I have no ability to leave it. I feel like it is too painful. I feel like I do not have the energy. It has been hurting me to colour in, which has been a go to activity for me for years. If I feel stressed or need to calm down I go to the colouring books, with my felt tips and take the time to colour in. It has been a ‘coping technique’ for me for a while now. I was starting to find it difficult as I feel my coordination has been lacking recently, but then it was still able to keep me distracted for a while. My problems now include it feeling like the pens are rubbing off my fingers and it hurts to hold the pens.

I have found it difficult to go to my yoga/pilates class and I haven’t even been going to walk through the pool. I think it is a mixture of feeling ill and having no motivation. At my last pain management physio appointment the nurse told me that she wasn’t going to be giving me another appointment at this time. She would like to give me time to try and get my medication sorted and settled before refocusing on attending my classes and doing the specific exercises that she gives me for “homework”. I’ve just to continue trying to move so that I do not stiffen up too much. Instead, I have to focus on keeping in contact with my friends and family and spend time with them when I can. She feels this will be more beneficial for me at this time. Once I am more settled then I have to phone her and make another appointment for us to set more physical goals. She also told me that I have to “stop being so hard on myself!” This is something that I have been told multiple times throughout my life. It is just very irritating feeling that you used to be able to do something, or should be able to do something and cannot now. I don’t know why but her telling me this seemed to really resonate with me. As I said, I have been told this a thousand times before. I don’t know what made that time any different? It got me thinking though. I think in some ways, on top of feeling rubbish, I am also punishing myself for not being able to do things. Which is not really fair to myself. I had been making an effort. I was having victories. I just need to take some time to feel a bit better, and hopefully get my medication and sleep sorted out and I’ll be back on track. This could be, or is, just a bump in the road on my journey. Just an obstacle to overcome.

I decided to get a flu vaccination this year too, which in hindsight was maybe not a good idea when I had so much going on in my body already. However, hopefully I will have protection from the flu! I will post more about my decision to get the flu jab another time, I think. On my last GP visit I told him that I was still feeling horrible and we spoke about some of the symptoms/side effects I have been experiencing and he checked me over. I have ‘flu like symptoms’ and he has given me anti-inflammatories to take as I have been having really bad earache and I also have tablets to take to protect my stomach lining with all these changes. My shelf is even more like a pharmacy unit! I am lucky though, throughout all this my GP has been really good and he is listening to me and he is having me in to keep uptodate, and to “keep an eye on things.” Especially while I am so run down. However, on a positive note, I had very good blood pressure! I feel this is a victory!

Things still feel very much up in the air for me. I still feel rubbish all the time but I also feel like I am being neglectful in not blogging. As well as feeling ill, I feel like the longer that I haven’t posted, the harder it is has been to get back into it. I was really hoping that once I started something would come, and it has! Another victory! I have been trying to be easier on myself, and I have been trying to do things that aren’t staying in bed all day. Try is all I can do though! Anastacia’s lyrics,

“Cause I’m sick and tired

Of always being sick and tired,”

keep going through my head. I know the song is not about being physically sick and tired but I feel the line is very apt for the way I am currently feeling! I am “sick and tired of always being sick and tired!” This post is my first step to try feeling my way through this hurdle, the first try at getting over that bump in my journey.

Walk in Water

A big part of having fibromyalgia is self care and self management. One thing I do to try and manage my symptoms is go walking through the swimming pool.

I had a limp when I walked for months. Somebody suggested to me that I should go swimming as it’s good for the joints. The problem is, I cannot swim. It’s something I always wanted to do but I have never been able to accomplish (it’s a work in progress). When I was younger I was nearly swimming but I got pulled under the water as a joke and I’ve pretty much had a fear about being in the pool since. It was then suggested to me that I should go to the pool but just go walking through it.

Now, due to the aforementioned fear, even the very thought of going to the swimming pool induced a lot of anxiety. One day I decided to go down and I walked through the pool. My biggest surprise that day was that I survived it. I could not walk very long through the pool. The fatigue hit me fast but I could get myself to the pool and out again without drowning! Since that day, I have continued going to the swimming pool at least once a week.

The water in the pool takes stress off of joints and makes it easier to walk. As well as this, the water also provides some resistance which helps make your muscles work. Water exercises are classed as low impact exercise. The movements you do in the pool does not have the same impact on the body as there would be doing it on land.

Some benefits of walking through the water include:

  • Muscle strength being improved.
  • Improved posture and balance
  • Greater movement and flexibility of joints
  • Improving general fitness levels
  • Eases stiff joints and sore muscles
  • Enhanced sense of wellbeing, better moods and hopefully better sleep.
  • Reduced pain and tiredness.

My progress is slow, very slow, but I am working on it. Like I have already mentioned, I believe it is walking through the pool that has improved my walking, however slight it may be. I have also been very lucky that I have had friends accompany me and walk through the pool with me, being my own personal cheerleaders and motivators. I still have a lot of anxiety regarding going to the pool but I am trying my best and that is all somebody can really do.

Walking through the pool is just one of the many things I have tried to self manage my fibromyalgia symptoms, just one of the activities that I am attempting in my journey of feeling through life.

“What are your hobbies? What do you enjoy doing?”

“What are your hobbies? What do you enjoy to do?” These are questions that I have been asked a lot recently. Usually by a medical professional, scribbling down some notes or filling in some sort of medical assessment. I find it a really difficult question to answer. The answer is I don’t know. I really don’t remember. From experience, I can tell you people tend to look at you strangely if you give this answer, to what they deem simple questions.

For years now I have felt like I don’t know myself anymore. Truthfully, I don’t know if I have ever properly known myself. I guess as a twenty-something year old, it is now that I begin to know myself better. There are things that I used to like doing. There are things that I used to do. I just don’t really remember, or know, what they are. It is not just my diagnosis that has made me forget what I like doing, or hobbies. I don’t remember having hobbies for a long time now. I had exams at school then I went straight to university. While I attended university I worked. After I graduated I worked extra hours, or cared for my nana or had some appointment trying to find out my diagnosis. Then when I got injured, I found myself in so much pain, and so much less mobility I now cannot do activities and tasks at all.

I am now faced with a lot of spare time, as I am currently unfit for work. I don’t know what to do with my time. The most difficult version I was asked these questions, was when I was trying to set goals with the pain management physiotherapist. This was more difficult as the questions had an extra element to them. The physio wanted to know what I liked to do that we can set goals to build up to. I do not know what I want to build up to. I don’t know what I liked to do, I did not really have ‘me time’ to do things. Now I have too much time and I don’t know what I like doing, as well as not knowing what my body will do without screaming at me.

One thing I do know I like is spending time with friends! So this weekend, Hazel and I went to Comic Con. To be able to go, I made sure I had painkillers with me and I wore heat pads to try and dull down some of the pain. I have never attended Comic Con before. I have a bit of a fear of people dressed up. Well, if I can see the person’s face I am OK…. Unless that face is painted as a clown! Then I am ALWAYS afraid! I had a lot of worries when Hazel asked me if I wanted to go with her. However, I had a great time. There was so much things to see, that I didn’t know what to look at first.

Now, I am not saying that going to Comic Con is a ‘hobby’ I have. I did enjoy myself that day though, and it is something that I would attend again! Trying new things can be a great time. Exploring new activities means that you might find something you enjoy doing, or find new hobbies. Even if you know how you like to spend your time, finding new activities contribute to your growth and development.

Right now, I am telling myself that it is ok that I do not know what I like to do. It means that I can, hopefully, have fun as I explore options and find out, while getting to know myself. I am still fairly young, it is ok not to know myself completely. Everybody is just trying to feel their way through life anyway – I am no different.