Lonely Caterpillar
 

Pack a bag

The last time I had to have a bag packed and prepared in case of a hospital stay was when I was pregnant with Elijah. After Miss Meg being in such a hurry to appear we wanted to be prepared in case the same happened again.

This Pack a bag doesn’t feel quite the same, theres no hope or excitement to accompany the fear. Instead of a bag that might have come with me to meet my new baby 10 years ago is a bag that might be the only item I see again from home.

This season is scary for us all. Every one of us are walking a whole new journey. We’re all trying to navigate this new normal. So many folks are facing risking their lives every single day, and we can say NHS staff signed up for this job but they didn’t, they signed up to care for people, no one ever imagined they’d have to risk their lives on the scale they’re having to and they certainly shouldn’t be facing added risk that could be avoided if the right PPE was supplied.

This is a season where we feel so grateful to those who are keyworkers and essential workers. To those who risk their lives, who save ours and who keep the world ticking over. We are all playing a part and those working from home although they don’t play a keyworker role now, they’re keeping our economy ticking over which is going to be key when we come out the other side of this. Those furloughed or simply staying home are playing a huge role in saving lives, so we truly are all in this together, all important and all valued.

My experience is of one of the ‘shielding’ group. I suspected I would be in this group with being immunosuppressed and having lung disease. When the letter arrived this week I had actually ended up in such a state of not really knowing where I fitted in this whole scenario that my first reaction was relief. Prior to my letter I had a brief conversation with rheumatology in which they told me that my infusions would be stopped indefinitely. There where some notes on my file that said ‘due to risk’. That was all I was told and understandably so as everyone is under so much pressure in the hospital. I then proceeded to watch some rheumatology Q&A’s and was getting conflicting information. Everywhere I looked the information was to not stop your medication. I wondered had it been an error, how would I cope indefinitely, was I staying completely house bound when I didn’t need to? So when the letter came at least I had some amount of clarity.

You see it seems like a really easy option to be the people who have to shield. All you have to do is stay home. Let other people get your shopping and medicine, sure you need to keep a distance from your own family and you cant leave your house. When everything is closed and there aren’t any trips apart from essential ones permitted then thats not really a big ask, is it? and its not in many ways.

I will have been shielding for 4 weeks this weekend, I am very willing to do my bit and protect myself, the NHS and others. However in 4 weeks I have a lot of time to wonder what next. This past three years has been terrible for waiting lists and accessing services. Lists for orthopaedic surgery where already exceeding 3 and 4 years. These where the surgery’s that where first to be cancelled, and no doubt will be the last to be reinstated. How many doctors and nurses from specialist teams will be completely burned out after this pandemic, how many will need and deserve substantial time off. I cant imagine that there will simply be an off switch for all of this and that normal will be something we will easily find our way back to. Where does that leave treatment for those with ongoing conditions? This is in no way our wonderful Doctors and nurses fault but if our NHS hadn’t been all but destroyed before this would I and others like me have been forced to take this trade off?

In the early days of the Pandemic, when coronavirus was a distant problem that surely wouldn’t come close to home. There was a lot of talk of how it would only affect the old and vulnerable. For a while the focus was firmly on the old, but we the vulnerable and the elderly where instantly and ‘only’. To be honest people seemed to begin to get on board with social distancing once ‘healthy’ people started to become ill. Although thats a natural reaction for society, these things very rapidly begin to deplete our value as human beings. To be feeling significantly like you don’t matter and then be asked, in Boris’ words to ‘remove ourselves from society for 12 weeks’, psychologically thats a really hard place to be in.

One of the last things I did just before all of this started was fill in my form to prove that I am disabled enough to receive money to live on. The government sent me this form as they need me to prove myself. Nothing makes me feel more worthless than those forms, like I’m begging for the government to support me when I don’t contribute to society. I have to prove that my life limiting incurable illness hasn’t gone away, and yet within 4 weeks they can send me a letter because they know I am so vulnerable that I need to not leave my house. How many of us will make our first trip out of our homes to a routine face to face meeting to prove we are suitably disabled and how many will still be refused?

I don’t want this to feel like a rant about ‘poor me’ because thats not how I feel at all. what I do feel is side lined by society. I feel and I felt before this that disabilities are very misunderstood. There are very few people with whom I can ever truly reveal how I feel day to day. I regularly feel ashamed of how little I contribute to society and my family. Even though my husband has a good job and pays his taxes and we have a small growing business which also pays tax, I still feel that ultimately I am a drain on this world. This current situation has only emphases that.

Ive seen a lot of people say recently that now the general public know how it feels to be restricted to your own home, to be afraid of getting seriously ill that they will now begin to look at disabled people differently. I am not so hopeful. I live in fear of the after this. I am worried about an NHS that is once again discarded when those in power no longer need it. I wonder will the people classed as ‘unskilled’ just a few months ago will get the recognition for keeping the country afloat or will they be taxed so hard they cant survive? What will be the cost of the after? This all feels very negative and its not my intention however I feel its relevant to keep our eyes to the future. When we are all so able to push so hard as a society for what we feel is needed now, can we keep that up for our marginalised after this is over? Can we refuse to let the most vulnerable be left sitting with their bags packed and nowhere left to go.