Mental and physical fatigue

I have spent quite a while just sitting at my desk wanting to write a blog but feeling absolutely exhausted. The thought of lifting my hands and typing feels like too much. Sounds ridiculous right?!

The MS Trust outlines how people with MS have described fatigue:

  • It reminds me of falling into quicksand/a swamp – it’s a viscous, heavy, pulling feeling, but if I try to fight it, it hurts like hell and robs me of breath.

  • Fatigue feels like being weighed down, as if you are trying to walk up to your neck in a deep, muddy river in heavy, wet clothes carrying shopping bags full of rocks.

  • Fatigue feels as if I am an inflatable, and someone has pulled the airstopper out!

  • Fatigue leaves me feeling dulled and tired. I find it hard to concentrate and to absorb new ideas, and I’m often confused, searching for the right word, and forgetting things.

(info copied from https://www.mstrust.org.uk/a-z/fatigue#whatis)

I can relate to every single quote above. My body and mind feel empty. There is nothing I can do to make the fatigue disappear. I go to sleep and wake up not feeling refreshed or ready for the day. I try to relax but find it difficult with pain. I try to ‘push through’ and do the things I want to but I soon discover that there is no ‘pushing through’ with fatigue. In the past I could keep going even if I was tired, but since MS the word ‘tired’ has a whole new meaning. It is a hideous and common symptom in MS.

Has anyone found any good ways to manage their fatigue?

Where’s my invisibility cloak?

I remember a time when….

  • I had confidence, ambition and drive
  • I woke up in the morning and felt well
  • I would walk everywhere quickly
  • I would excel at my work
  • I had a very busy schedule
  • I looked forward to things
  • I was physically fit
  • I had careers goals
  • I engaged in charity work
  • I pushed through anxiety to do public speaking events
  • I could see the world in single vision
  • I would always search for solutions
  • I saw a hopeful future.

Now? Every day feels the same. A mixture of pain, fatigue, dizziness, double vision, hypers and hypos. I wake up with intentions to do XYZ but I rarely complete half of X. My life is filled with administrative jobs that do not inspire or excite me. I have a mass of student debt, a First Class BSc, a Distinction MSc and nothing to show for it apart from two certificates in a drawer somewhere. I am trapped in an endless cycle of symptoms, both physical and psychological and each battering the other.

I am empty these days. The knowledge I had slips away with my physical ability. I exist to pay the bills, to wake up and wait for bedtime.

It feels like such a waste of this life. I just want to throw an invisibility cloak over myself and disappear.

(ne)Uro waste of time

The neurology app that I had waited months and months for was pretty pointless. I try to keep an open mind but it tends to be the same. It always fulfils my suppressed assumptions of being a complete waste of time.

At the start of the app, there’s an awkward introduction of my partner who he (the neuro) always forgets and guesses to be my sister then pulls a face when I say she’s my partner. We then continue to talk about my health – or lack there of. This app was to discuss my MRI, which the neuro was rather hacked off at me for looking at. I knew it would take months before I heard anything so i wanted to look at my own brain.

I have felt so unwell over the months. I have been pushed back and forth every service with no answers and I have wondered if my symptoms are MS related. My old symptoms have worsened and I’ve had a few new symptoms. The neuro is convince that my MRI shows no new activity. He rather sharply told me that my scan has been seen by 3 radiologists and told me that looking at the images only succeeds in making me feel scared. I explained that living with MS is scary whether I look at the scans or not. He was silent.

I felt very unwell before the scan, it is not that I had the scan and saw what I thought was a relapse then started feeling unwell. I felt unwell, had the scan, and tried to make sense of the images myself. It did not make me feel any better or any worse.

I want to learn more about my chronic condition and so I asked the neuro a few questions. I only received vague answers and in response to ‘what does an MRI look like that shows a relapse’ he told me to look on the Internet for images.

It felt like he thought I was wasting his time. Yes, you cannot cure my MS. Yes, you cannot remove all of my symptoms. Yes, you cannot predict where MS will take me. But what you can do is stop being so arrogant and cold. You can have interest in how MS affects my life, you could discuss my fears and offer emotional support. You would be surprised how much more fulfilling apps would be if you didn’t treat me like an MRI but treated me like a person with MS.

I am not looking forward to seeing this same neurologist in 12 months time. I am going to try and seek support elsewhere because he certainly does not provide any.

You’re such a lazy ****

It is surprising how many words one can think of to complete the above sentence…all of which are colourful, expletive and wouldn’t be said before the 9pm watershed. And are not compassionate things to say to oneself!

It’s 2pm and I am still in bed. I had plans and ambitions for today, and the total of those which I have accomplished equates to a big zero.  Usually this would trouble me and I often spend time trying to work or complete my intended goals but today is different. Today I am paying more attention to my body and mind.

My body aches a lot and my eyes feel funny. I had a few hypos in the night and woke up with a hypo too, my blood sugars just kept going down. And any other 90s kids will know the song that keeps going round my head

To add to it all I feel fatigued. If someone came to me with the same symptoms and asked what I thought about them spending all day sat at their desk working…I would not recommend their chosen activities at all. Instead, I would suggest that they could do things that they find relaxing or enjoyable, things that do not overly challenge the body or mind. I’m taking the advice that I would give someone else. I’ve ditched my plans, the guilt of doing so, and the unnecessary feelings of failure.

Sometimes I feel stubborn. I don’t want to adjust my plans, or life, to accommodate MS. However if I don’t at least try to my body tends to produce even more symptoms! I do have work that needs to be done but nothing that cannot wait for tomorrow, or Friday, or even next week if necessary.

The challenge of having an invisible illness is being able to accept that there are times when you need to stop. If I wouldn’t expect someone with a broken leg to be prancing around or racing up a flight or stairs, why do I expect myself, who is feeling rotten, to work? Just because there is no physical evidence of how rubbish I feel does not mean I don’t. I am trying to stop giving myself a hard time because MS, type 1, depression, and anxiety make my life difficult enough.

Throughout the time I have written this blog my blood sugars have plummeted to 3.1…now that I have munched sufficient sweets I am going to dive (I say dive, I mean slowly slide) under the duvet.

It’s not giving up, it’s letting go.

 

 

Under 30yrs or over 100?

I have felt unwell for many months now, I think this entire year has been consumed by the fog of symptoms. My mental and physical health are making each day a challenge. I have always had many goals and ambitions but I feel like my life has been at a standstill. My days are all the same – usually the only time I leave the house is for a medical appointment or a work meeting (the latter happens v. infrequently). My career seems to have stopped (despite having 2 degrees, experience and publications) but I am at a loss of what to do the make any steps forward. I like to ‘problem’ solve and have tried several different things but I’m still stuck.

I can really see how receiving a diagnosis can trigger a grief cycle, the loss, the anger, the sadness…all spiralling around until reaching the wonderful stage of ‘acceptance’. I find it difficult to accept MS especially when the grief cycle does not seem to end. Each time there is a new symptom, the cycle starts again.

There needs to be a significant life change but what? In 12 months time I do not want to be in the same lost place. What can I do? I used to be involved in charities, volunteering for a crisis helpline and writing blogs for another. I felt like I had a purpose and was contributing to the world – positively helping or supporting other people. Nowadays, my jobs make me feel quite empty and I have ceased charity work, due to my health.

Perhaps it is time to get back to the voluntary work. At the moment I am just a massive drain on the NHS! I want to make my existence feel a bit more worthwhile. I think this would make living with all these symptoms easier to cope with.

MRI – My Random Indicia

I feel confused! I had an MRI last month and I have received a letter from the neurologist but the contents is not what I expected. I managed to take a copy of my scans away from the hospital and have been geeking up about them. Looking at the T1 scan with contrast I can see various bits of bright white – which according to my research suggests active inflammation.

MRI

My letter states that the scans are consistent with MS (which means I have not been magically cured) but that there is no convincing evidence of progression or deterioration. The letter also mentions that there is nothing new or active which would precipitate memory problems – this has not been my only symptom, I’ve had many! I don’t want to have any more lesions but I think I have had one especially looking at my scans compared to 2014, seeing all the white areas on the contrast T1 scan and considering all my symptoms. I have felt so lost over the past few months. I think it would help to know if MS has been the cause. I am trying to chase the MS nurse but I cannot get hold of her at the moment. If anyone knows about MRIs I would appreciate some insight into the scans above!