'Living with' Series · Chronic Illness · UCTD

Living with… UCTD

Today I am writing the third instalment of my ‘Living with…’ series, which details life with my five chronic conditions. You can read the first two instalments on Tourette Syndrome here and PCOS here.

So, life with UCTD. UCTD for those who have never heard of it, (I never had), stands for Undifferentiated Connective Tissue Disease. UCTD is normally diagnosed when a person has a number of specific symptoms and blood results related to autoimmune disease, but not all the symptoms to suggest a specific condition. Put simply you have the signs of autoimmune disease, without a full blown conclusion. Some people find their symptoms develop over time leading to a definitive condition, whilst others remain the same therefore never leaving that pre-diagnosis phase of illness.

When and how I got diagnosed.

UCTD is my most recent diagnosis and I have had officially had the condition now for around 6 months (longer if you count how long I have been unwell). I was diagnosed by a rheumatologist after displaying a number of symptoms which didn’t fit in with my Fibromyalgia or ME/CFS diagnoses, alongside a number of flagged up blood results. My consultant believes based on my symptoms and bloods, my UCTD is leaning towards Lupus.

The symptoms of UCTD differ from one person to another based on which condition they are linked with. For me, a lot of my symptoms were masked over and hidden by my other conditions and often explained away because of them. However, I knew in myself this wasn’t the whole picture and it was my blood results rather than my symptoms which finally paved the way for further investigation.

Living with… Series

What do I find different with UCTD?

The biggest difference between UCTD and my other conditions is this is the first condition I have ever had where I have received medication. With all my other conditions I was always told to self-manage and learn to live life with these limitations.

What I wish other people knew about the condition

As with the majority of my conditions, the most difficult thing about UCTD is the fact it is invisible and because it is invisible people don’t think it is real. On top of that UCTD tends to be an unknown condition, again making people become quite dismissive. I wish people understood the nature such conditions take on a persons body and realise that just because you don’t see see it doesn’t mean it isn’t happening.

The most difficult thing about living with UCTD

The most difficult thing about UCTD is the uncertainty of it all and whether this is going to be as bad as it gets, or whether I am going to get worse. Perhaps this has been somewhat determined in recent times because I had a telephone appointment with my specialist who said I needed to get my regular bloods done, and if all was well I would see him again in 12 months. However, I had a letter saying they would like to see me in the lupus clinic. It turned out my bloods were not great, and now 12 months has turned into 3 (although this has been extended due to covid). So, who knows what the future holds.

With all this said and done, if UCTD has taught me anything it is this: diagnoses are sometimes not always set in stone, symptoms can change, and I was right to trust my instincts all along.

xx

New instalments of the series are now available – click the condition to find out more: Fibromyalgia, M.E/CFS and Mental Health.

Activities · Chronic Illness · Goal Setting · Goals · Mental Health

The Pros and Pressures of Goal Setting with a Chronic Illness

We are officially making our way to the end of January already, and by now I am sure there are many people binning their new years resolutions, promising themselves they will start again soon.

This January 1st I made the decision for the first time in many years to not make new years resolutions. Why? Because I never ever complete them and as a result end up berating myself for my inability to achieve what I set out to do.

For anyone chronically ill or not, resolutions can be hard to keep, so why do we bother doing them at all? Maybe it is because a resolution is a firm decision to do something and that can be too much of an ask especially on bodies that don’t play ball. This is where we enter the world of goal making.

If you are like me and have been to anxiety and depression workshops or spoken to mental health practitioners, you will know goal setting is a vital tool used in the management of anxiety and/or depression. You may have also heard of the theory of using SMART when it comes to setting goals to make them more achievable. Specific Measurable Achievable Realistic Time-limited goals are deemed easier to accomplish.

Goals are a great source of focus when it comes to dealing with mental health as a way of giving yourself direction, motivation and confidence when you can see your achievements taking place. But how useful are they in chronic illness?

As someone who has multiple chronic illnesses and someone who has suffered with mental health issues I find goal making a juggling act. My mental health needs a focus, to feel like I am working towards something, but setting goals also brings out the ‘pre-chronic illness me’ – the person who cannot stop until something is finished, the person who overthinks, over plans, who wants to overachieve, and therefore puts the ‘me of today’ at risk by pushing my chronically ill body beyond it’s limits.

Of course there is no ruling saying you need to achieve each goal on the day you say you are going to do it, yet it doesn’t stop me from trying. To top it off on the days when it is so physically impossible for me to do so, I play the blame game with my own body for not allowing me to tick it off the list.

Photo by Markus Winkler on Pexels.com

So what is the answer?

I think goals are a useful tool for most people, but I think personally for me adapting the format they take in my life is key. Using the SMART goal system whilst useful needs fairly generous adaptations to fit in with chronic illness life that as many of us know is so unpredictable.

My adaptations include:

  • Adjusting the goals on a regular basis inline with what my body needs at that moment in time. E.g. If I am struggling with my symptoms I will change my goal specifics each week (if indeed I am able to do anything at all) to determine what I am capable of each week/day.
  • Taking regular breaks from goal setting – Having my mind constantly set on achieving goals brings out the ‘me’ before illness and whilst I believe it is important for me to have a focus, I also think it is important for me to have times where I am not preoccupied with trying to achieve something. At times it is nice just to be and deal with what is happening right now.
  • Learning to be kind to myself – This really is a work in progress because I often find myself falling into bad habits, but reminding myself it is ok if I haven’t completed a goal on the day I had scheduled to do it, because it is not my fault can be helpful thinking.

In conclusion, goal setting is a great tool to have in your ‘medical toolbox.’ Goals can work wonders for your mental health and give you a sense of reward, however as always it is always vital to factor in your chronic illness needs in line with that. Pushing yourself is something your body won’t thank you for, so always be true to yourself and remember just because something didn’t happen today there is always tomorrow.

Anxiety · Chronic Illness · Mental Health · Personal · Stress Management

Talking to a Stranger – The Benefits of Counselling

The thought of talking to anyone – stranger or not, can be a terrifying prospect for a lot of people. The idea of spilling your deepest fears, thoughts and experiences can even bring you out in a cold sweat and maybe once upon a time it would have done the same to me, but not anymore.

I have been to a number of talking therapies since my teens. I say talking therapies because two of those occasions were classic counselling scenarios and the other three were through the healthy minds service at my doctors surgery. The difference between the two being healthy minds focused on techniques and goal setting to improve anxiety and depression e.g. CBT which were about moving forward. The classic counselling sessions were much more relaxed and I was in control with what we spoke about which enabled me to talk about my past, present and perceived future.

The key element when it comes to counselling is finding the right counsellor that is a fit for you. The first time I tried counselling I did not gel with the women I was with at all and although you had the option to change counsellors, I felt obliged to continue with her and as a result played down my emotions trying to give her the answers I felt she wanted to hear. The second time I tried, several years later, it couldn’t have been more different and I was able to open up about my real emotions meaning I could really tackle the things that were holding me back the most.

In a nutshell I went to counselling to force myself to confront the anxiety I had held on to since childhood and to face my demons regarding my multiple chronic illnesses. At the time of attending counselling sessions I was very much in the grief process of my illnesses – grief for the life I had planned that I now wouldn’t have. Unknown to me I had been in years of denial (and I mean years) trying to convince myself my diagnoses were wrong and that there must be something out there to make me better, as well as toying with anger that this was happening to me. It was during my counselling period that I went through the bargaining stage making myself go back to work in the quest to get the old me back which only ended in disaster and as a result a period of sadness and emptiness rather than depression. It was only after I finished counselling I entered into the stage of acceptance – something I found I needed to do on my own.

Photo by Artem Podrez on Pexels.com

Counselling wasn’t a quick fix to me accepting my conditions and my altered reality, but it was a way of getting to open up in a way I could never do with anyone else. Talking to people who knew me was hard because of just that – they knew me. They felt my loss as much as I did and I couldn’t be honest about how ill I felt each day or how worthless I felt about what my life had become without upsetting them. I couldn’t express how their behaviour made me feel without hurting them and that was the last thing I wanted to do. For more about family, friends and chronic illness read my previous blog post here.

Talking to a stranger who didn’t know me or my life, or anyone in my life for that matter was a great comfort. A source of support that I began to rely on each week. Taking to this woman, I was able to shake my guilt and admit my jealousy of seeing other people move on with their lives whilst I felt stuck. Instead of covering up my feelings I was able to be open which enabled me to realise that my feelings are credible and that it is ok not to feel ok with what has happened in my life. I shouldn’t have to filter my emotions. As well as the emotional bits though, counselling also helped me to get to know myself again – to realise there was more to me than my conditions.

Nowadays we have so many avenues when it comes to reaching out to others, it is just about finding what works for you. Counselling can take a variety of different forms and in this current climate you don’t even need to leave your house to access it. You can take part in telephone sessions, virtual online ones and if talking 1-2-1 is not your thing there are resources such as support groups to get you started.

For anyone struggling with finances I know traditional counselling with a qualified practitioner can be near impossible, I have never been able to afford private counsellors myself. Instead you can follow in my footsteps and access charity counselling services which are normally run by volunteers who only request you make a donation for each session based on what you can realistically afford.

Counselling in whatever format is definitely something I would recommend especially if you are unable to talk to people in your everyday life. There is no shame in needing to talk to someone and share your feelings. In fact just saying them out loud can make such a big difference and talking to a stranger can be more therapeutic than you think!

Chronic Illness · Gifts · Haul · Hobbies · Personal

Chronic Illness Friendly Gifts Haul

Happy New Year everyone and welcome to my first blog post of the year. I can’t believe we are in 2021 already, but I am excited to be back blogging and have many ideas for the months ahead.

Over the festive period I watched a lot of YouTube videos and noticed that a lot of YouTubers and influencers do videos about what they got for Christmas, so this has been my inspiration for my first post. I thought I would share with you the chronic illness friendly gifts I received at Christmas and why I feel they are beneficial to my chronic illnesses.

Please note gifts are not about expense, they are about finding thoughtful ideas which mean a lot to another person. Smaller things are often things that mean the most.

Items to keep me warm

As any chronic illness warrior will know keeping warm is a must. My conditions impact my circulation so I am cold the majority of the time. With this in mind I was delighted to receive a brand new fluffy hot water bottle and a mustard yellow bobble hat – both great additions to these cold winter days.

My Winter Warmers

A Massage Gun

Alongside my Fibromyalgia pain, I do get a lot of muscular aches and pains from my body tensing due to my Tourette’s. The massage gun comes with a variety of different heads designed to help with a variety of problem areas on a deep tissue level. Whilst I wouldn’t advise this for Fibro pain because the vibrations can actually hurt your body (and it did mine) I have found it helpful for specific knots.

Skin Products

My skin is so sensitive it is unbelievable, so much so I tend to struggle with even the ‘sensitive friendly’ products you often come across. I am yet to try these, but my mum gifted me the cutest beauty products in the form of Simple facial wash, micellar water and moisturiser. A couple of them are hypoallergenic (REMEMBER to always check when using products yourself) and contain less plastic. So watch this space with how I get on.

A selection of books and films

Being chronically ill you are often struck down with days where you really can’t do a great deal so having items such as books and films are a great resource to pass the time. I received a variety of films including Christmassy ones such as Last Christmas and horror ones such as IT Chapter 2 which I can choose based on my mood and books from my favourite authors Erin Green and C.L. Taylor.

Reading Time

Stretchy Dresses

I know a lot of people with chronic illness like to wear comfy clothes that are easy to wear and don’t require much fuss, I have to confess for me that consists of skirts and dresses more so than trousers. I was lucky enough to receive two dresses for Christmas which are comfortable and stretchy all whilst remaining stylish. These are perfect for someone like me who often has a bloated stomach as I don’t have to worry about anything digging in.

Money

One of the most useful gifts you can receive as a chronic illness person is money. Being chronically ill and working class I struggle for money a lot and having money gifted to me allows me to buy those things I need the most, yet often cannot afford. Not having money also makes you think more about spending it on worthwhile things and not just blow it on any old thing, so I am still planning what I would like to spend it on and what I am of need of the most.

Other Gifts

Art Gallery Gifts – Art Galleries are a huge hobby of mine and the art displayed in them often evokes an air of mindfulness for me not many other activities do. Even without current times I do struggle getting to galleries so gifts which enable me to enjoy the atmosphere in my own home is amazing.

Duvet CoverMug Diary

Here you have it the chronic friendly gifts I received this year – I am so grateful for the gifts I got and thankful the buyer considers my chronic illness needs. I think chronic illness buying can be quite a difficult task for people who don’t have chronic conditions – did your loved ones consider your needs this year?