A Friend in Need by Victoria Bartlett

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Life and Disorder – Living with Gastroparesis

I am really pleased to be home, after another month’s stay in hospital I had my surgery to fit a Jejunostomy feeding tube this goes into tummy and then the bottom end of the bowel. Unfortunately this became blocked so I had to have it replaced. (I am now chained to my feeding tube and pump for nearly 20 hours a day, just to get the nutrition I need).Jejunostomy tube

My visit to the Queen Elizabeth Hospital was a short stay by my standards generally I am in at least three months. Over the last three years, I have collectively spent over a year in the NHS Spa! Being in hospital bring its own set of pressures and problems, not only for the patient but also family and friends.

His Lordship (my husband) has been wonderful, visiting every day taking one of my 23 pairs of PJs to home wash. I don’t have any other close family, so His Lordships visits are very important to me. I even had to tell him not to come sometimes, as he works full time. On those days, you try and plan for friends to come but over the years, since I was diagnosed with Gastroparesis (GP) I have lost a number of friends.

Once you start to become really ill, friends and family are very concerned but as the condition sets in, it becomes more difficult to have a social life and be a friend. I have experienced the way in which people see and treat you changes. In true David Attenborough style I have observed and classified them in their natural habitat.

The Nodding Smiler: this is someone, who really doesn’t know what to say to you. They nod and hold eye contact but then there is “that smile”, which makes you feel like a lesser person. This type of friend will stick by you at first but may gradually lose contact as they become too “busy”.

The I’ve Had That: this friend is generally very competitive. They will ask you about your symptoms and then give examples of how theirs have been worse than yours. Be prepared for a medication competition to see who is taking the most drugs. (They will always win, even if they are taking supplements and over the counter medication.)

The Social Butterfly: this friend will come and visit, bring you all kinds of gifts and magazines and promises of coming again. However after the initial burst of activity, they may find it difficult to fit you into their social calendar.

The Facebook Friend: These people will not start out as friends. But you get to know from them from a forum or Fbook page that is relevant to your condition. Some of these people you would not ever mix or socialise with, if it wasn’t for your illness. But they get it they understand, these are the friends who are there for you at 3am, when you are in pain and can’t sleep.
Having a chronic illness really does test the relationships that you have but as any medical website will tell you it is important to try and keep some kind of social life, as it is easy to become isolated and depressed.

As for my own situation, well I am very lucky to have His Lordship and I love him more each day for the support he gives me. (Even if he did confiscate my car keys!) I have some very good friends, I have lost a couple along the way but I am grateful for those I have. They are going to be even more important to me as I continue my journey. Next stop, down to London, to consult with the Prof and a surgeon about my Gastric Pacemaker operation.

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