Struggling with Storms but hoping for a Rainbow…

Well, today marks the start of a brand new start month.  The start of something new – whether it be a new day, month or year.  It is like a fresh, white piece of paper, in which the past and everything that has come before is forgotten and instead we are allowed to start afresh.  To start our story anew.  It opens up new possibilities and opportunities and allows us the hope for a better today and tomorrow (and beyond).

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And this is most important when living with a long-term health condition.  To live with illness everyday is most difficult; and perhaps one of the most difficult aspects of living with a chronic illness, is the unpredictability of it and the unknown of what each new day will bring.  Even with every little sign of illness such as a headache, for example brings the fear of the start of new symptoms or even the possibility of a deterioration in our illness narrative.  Therefore, hope is a vital thread for us to hold onto as it allows the possibility of a life without chronic illness and our lives dictated to by our symptoms.

During the recent weeks since by last blog post, I have been trying to remember these points.

As much as I have been trying to remain positive and to hold onto the invisible thread of ‘hope’, I however have been living with the storm clouds above my head.  Just before the beginning of 2015, I had the hope that this will be a really good year.  Don’t get me wrong, I do not have the irrational belief that I would miraculously be cured during the coming year, but as I had a few good weeks before Christmas, I did have the hope however that it would be the year that my symptoms would not deteriorate and I would experience a decline in the severity of my symptoms.

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It would seem that this particular thread of hope has unravelled.

In fact these past few weeks has been the hardest weeks that I have experienced in relation to my chronic illness for a long time.  It often feels that my body is taken a severe battering from all of my symptoms.  The dizziness has been so severe, that even doing the simplest things extremely difficult.  The trembling and weakness in the legs has also been very severe, that as my legs are feeling extremely jelly-like, that recently I have lost all confidence in being able to visit our local town centre and walking around the shops.  Using my wheelchair is obviously one option, however due to the severe dizziness and the constant perceived motion that I am experiencing, it would make me feel even worse.

Everyday of late has felt like an uphill battle from the moment I get up out of bed until I go to bed later that day.  Because of the severity of the dizziness, nausea, weakness as well as the increased levels in fatigue, has meant that I often just want to go to bed and burrow myself under my covers and stay there for the forseeable future.  However, I have not given into my longings and have been pushing myself to still going out, although am finding my trips out have been considerably shorter than previous months.

During my last post, I discussed the feelings of loneliness and isolation that can often accompany chronic illness, and during this recent battle these feelings have unfortunately only increased.  Perhaps one of the main reasons is not letting anyone in my close circle of friends and family know just how bad things have gotten.  Of those who are in my close circle of confidants, I have tried reaching out, not getting an immediate response when I actually in need of someone.  This has often only increased the feelings of depression.  Often thoughts of whether I am liked within my circle friends often follow, stupid I know but perhaps illustrates how difficult things have gotten recently.

I am trying to think of some ways to widen my social life, and perhaps make way for new friends, perhaps even considering the social network Meet Up and setting up a group for those like me who are living with a chronic illness or disability and who are also socially isolated because of it, just a thought in progress at this stage but would love to hear your thoughts and whether anyone has had any success with the site.

At the moment I am dealing with dark storm clouds still have hope of the appearance of a bright and beautiful rainbow in the hopefully not so distant future…

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2 thoughts on “Struggling with Storms but hoping for a Rainbow…

  1. Sending love and spoons your way! I know how hard the social isolation can be – I’m trying to find ways to broaden my own social circle, but it’s proving rather challenging. I like the idea of a fresh start this month though!

  2. You have a beautiful spirit. Hope is vital, I agree. I’m sorry you’ve had a horrible flare recently. Your post reminded my recent situation and how I approach things. I’ve got trigeminal neuralgia and chronic migraines. The TN comes from a pontine lesion, so it is inoperable. My pain has been intractable as of late, and I call them pain storms!! I also have been suffering from what might be focal seizures – spells of dizziness, nausea, facial twitching that leads to paralysis, etc. etc. etc. I try to stay positive between the pain and feeling ill. I am so glad I came across your post of that random Facebook group about chronic pain blogs. I look forward to following your journey, and hopefully supporting you along the way.

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