All by myself

I always hesitate about writing really personal posts online.  It’s difficult to admit your weaknesses and vulnerabilities and I don’t want to be seen as whining or depressed because I’m neither.  However, I always wanted this blog to be an honest account of my life and unless someone speaks about personal issues we’re all going to go through life thinking we’re the only ones to think and feel the way we do.

My life is extremely isolated.  Neither my close, nor my extended family, have had much to do with me my whole life (none of my 3 brothers lived with us while growing up so I always felt like an only child), and this got even worse when I became sick.  My Mum has been my best friend my whole life and there is very little I couldn’t discuss with her.  Even at the age of 46 I speak to her every morning, visit her 5 times a week, and sometimes ring her in between.  If I’m watching something good on the TV I ring and discuss it with her.  If I buy something nice she’s the first person I tell.  If something bad happens, she’s the person I discuss it with.  She is, and always has been, my rock.  And I’m very conscious of the fact that in the next couple of years, possibly sooner, she will no longer be here.  The thought gives me an actual panic attack and I worry for my mental and emotional health when she’s no longer around and I am absolutely alone.

I only have two close friends.  I rarely get to see my best friend as she lives hundreds of miles away so we speak on the phone for about 1 hour a week  (although I haven’t currently spoken to her for nearly 3 weeks as she’s so busy).  And whilst I’m eternally grateful she stood by me for all the years I was bedridden (she was the only one that did) I’m not sure I can feel grateful for the rest of my life.  In fact I feel resentful that she can’t even manage an hour a week for me.  Not that I’d ever say anything.  When you love and care about someone you actively want to spend time with them.  You want to share in each others lives.  You don’t have to be reminded to ring them, or to slot them in to your busy schedule.  You can’t force people to want to speak to you and I’m not about to try.  Oprah and Gail speak every single morning, and every single evening before bed.  Oprah is married and is one of the busiest women on the planet, yet Gail is just an integral part of her life and to not speak to her every day would be unthinkable.  I don’t buy the “I’m busy” excuse for even a fraction of a second.

I see my other friend about once a month and might get the odd email in between meetings, and while I really do love spending time with my friend the level of contact is never going to be enough to fill the gap which is going to be left by my Mum.  Got to be honest, I’ve had times where I’ve felt hurt that my friends don’t care just a teensy bit more about what’s going on in my life but then they’re both married and if you’ve never lived alone you can’t possibly have any concept of what it’s like to be this isolated.  Plus I appreciate I am not their responsibility and they both have enough on their plates than to worry about me.

I’ve been virtually housebound for 20 years.  Not only that, I live in a very rural area which is sparsely populated.  I don’t go anywhere to meet new people or make new friends.  And even if I did, it’s incredibly hard to meet people you really click with and who share your interests, values and sense of humour.  No-one can ever replace my Mum, but I wish I knew how to cultivate a close friendship that will at least partially fill the gap when Mum is no longer here.  I have no clue how to go about it, which sounds sad and desperate even to me!  Healthy people often don’t understand that I can’t do things or go places with them, which sometimes comes across as me being stand-offish as I decline every invitation which is made to me.  I think they also worry that, because I’m ill and single, I’ll be clingy and needy.  Sick people tend to often just want an email friendship which they can pick up or put down when they’re not well, which I totally understand but then the friendship becomes about them and their needs all the time and not about me and my needs.  And to be honest I’m fed up to the back teeth of fitting around everyone else’s schedules and catering to everyone else’s needs, while mine are endlessly ignored.

I don’t even begin to have an answer to my situation.  Good friendships take years to build, and as my time with my Mum is limited I know it’s an urgent problem which needs to be addressed.  If only I knew how.

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18 thoughts on “All by myself

  1. Jennie Shellard

    Oh dear, I have just read your latest post and my heart goes out to you. I too have a rock, my sister, and I’m luckier than you I that she might outlive me!!!! My other rock is Sooty my poodle border terrier cross. Where would I be without them both. It’s extremely hard to make new friends and I don’t really have any very bright ideas. I live in the South of or I would drop by!!!! Please don’t feel alone and do reply to my post. I would be quite happy to enterinto en email correspondence but don’t quite know how to go about that!!!! Onwards!!!! Jennie

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    1. bertieandme Post author

      Awww, that’s kind of you Jennie and I appreciate the empathy 🙂 I think it’s difficult for many middle aged or older people to make new friends, especially when living in rural communities, but sadly harder for me as I’m not able to get out to classes, or join the Ramblers, or any of the other things healthy people do. I keep hoping a hunky middle aged divorced man might come and live in my village but so far no joy *grin*. Jak x

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  2. Sherry denBoer

    And if only I knew. Same challenge over here :).

    I feel, on some level, that I am your friend despite our distance from one another and that we have never met (and likely never will). It is the authenticity of our limited communication that fuels this feeling of friendship.

    I get it.

    It is the way of most of the chronically ill.

    All I can contribute, in this moment, is that when I feel sad and lonely…when I wonder why or how I came to be so alone almost all of the time, when I am bothered by the lack of people who support me in my illness (they may care but they keep their distance), when I feel that I have so much to give and no one to give it to…well, sometimes I weep, and then, as you probably do, I get over it – for varying degrees of time.

    And as often as I can remember to do so…I remember that my perception is my reality. I am no less lovable or loving just because I am on my own almost all of the time…and I recognize that my friendships are diverse and that I do not need to label or judge one as more or less valuable than another – no matter how infrequent or fleeting they may be. And, I remember that a lost friendship does not mean that that friendship did not and does not still hold value and meaning in my life.

    As you so obviously know, but I will say it anyway… Living with a chronic illness means minute to minute management of symptoms and limits most activities – this makes it rather challenging, to say the least, to cultivate existing relationships let alone make new ones. No cultivation…well you know what happens.

    And… Some of my most authentic, fulfilling, energetic, and spirit-lifting interactions have been with total strangers.

    Some of the loneliest folks on this planet are seemingly surrounded by people.

    I believe that it is how we feel about ourselves that will contribute to or hinder our perception of others and of our relationships with them.

    When I am lonely… I try to remember to choose love. My life, and whatever it has for me in this moment, is too important, yes and too short, to shadow it – to burden it with a constant deluge of obsessive negative thinking, persistent evaluation of misunderstandings, disappointments, misperceptions, and fear (all of which I am shamelessly guilty of tending to). I have my moments… those when I feel overwhelmed, small, angry and exhausted – even bitter – because the illumination of this shadow – the shedding of this burden – is an ongoing project, a tough challenge, and requires my constant attention and devotion…and a massive helping of self-love.

    Thinking of you. Using my imagination for a person to person visit and a cup of tea :).

    Warmly, Sherry

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    1. bertieandme Post author

      Thanks for the cuppa Sherry, appreciated it! 😉 You’re right that this ill life takes constant attention and devotion…………there are days when you’re so exhausted from it the effort is all too much and you just want someone to care enough to ease the burden a little. But in my case there is no-one, so the next day I’m hopefully feeling emotionally stronger and just get on with it again.

      I’ve luckily never felt less loveable or likable because of my illness. I think that’s why I’ve let some long time friends go over the past year or so. I deserved more than being fit in whenever they had a spare half hour – just because I’m sick doesn’t make me any less of a good friend or good company (in fact, just the opposite I feel). Like many people who are housebound I used to wonder if I was boring or had nothing interesting to say, but then all my healthy friends do is moan about houswork or the kids or their husbands, so it’s not like their life is any more exciting or interesting than mine!

      It’s a hard road we tred, but I’m thankful that I get to share it, albeit electronically, with lovely people like you.

      Jak x

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  3. Marley

    Dear Jak,

    I get what you are feeling in your post today. I live in a beautiful area outside the limits of a small town in North East Georgia, U.S. I recently helped an old school friend, by e-mail, cope with her husband’s second round of cancer. I live on the Eastern side of the U.S. and she lives in Seattle, Washington on the West coast of the U.S. about 3000 miles away.

    Although it was rough, her husband made it through a stem cell transplant. She gave me some advice and said that she wished that she had not worried so much during the past 6 years.

    I have one best friend who is my husband. I thank God for him and for the beautiful nature around me. I see deer out my bedroom window lately. Yesterday, I saw 2 fawns(baby deer, all legs!) with their mother.

    I have a Bluebird House outside my kitchen window. I enjoy listening to the baby bluebirds when the parents feed them. My short haired Chihuahua “Garcia” is my constant companion.

    Since my mast cell trigger is the bite of a fire ant, my hobby of gardening is difficult. I have had anaphylaxis 3 times. On the last anaphylaxis, I went unconscious on the concrete, eyes wide open at the summer sun. My best friend-husband brought me back with an Epipen injection into the thigh muscle. I should have been protected after 4 years of Allergy shots to the Fire Ant.

    It was the fire-ant that led me to the Allergist, who led me to the Hematologist/Oncologist and the diagnosis of Systemic Mastocytosis by bone marrow biopsy.

    To continue my gardening hobby, my best friend-husband hired workers to repair our screened-in-porch. So everyday, I can take relaxation time and container garden on the porch. It’s my oasis. It’s my happy place. No worries there.

    Friends come in many shapes and forms. Try to remember the good times and not the bad. When we are born, we do not come with a warranty. Life is HARD! When someone hears the word Cancer, they sometimes don’t come around or call. I love my brother-in-law but he has stopped texting me and doesn’t visit as often.I have cancer in my bone marrow. Ten percent of my bone marrow is crowded with malignant mast cells. The precursor of the mast cell should be in the bone marrow, but not aggregates of spindle-shaped mast cells with cell surface markers of CD117, CD2 &CD25.

    CD means cluster of differentiation and refers to the arrangement of proteins on the cell surface. A bone marrow specimen is run by Flow Cytometry to find this. I am waiting to hear from Dr. Mariana Castells, MD,PhD, Allergist/Immunologist in Boston for the results and stage of my Systemic Mastocytosis from my trip July 29th. I could use a friend right now.

    You are lucky to have a wonderful relationship with your Mom. My mother had a hard time with 3 children to raise and the unexpected early death of my Father. She could be cold and distant at times, but found joy in her cooking. I am not close to my brothers. I used to say that we didn’t grow up; we tumbled up! One brother is a Sociopath and used my Mother’s dementia and bank account to further his lifestyle.

    My oldest brother I swear does what ever his wife says. They visit her family on all Holidays. I got cut out of my brother’s life due to his wife.
    Well, I have gone on much too long. Dr. Castells wrote a prescription for me for Gastrocrom (Cromolyn) liquid. Cromolyn is a mast cell stabilizer. She told me that it is for my brain fog. I am very cautious now of all medications. Tomorrow I start a crown at the Dentist. I’m sorry about your tooth and the pain it has caused you. I had a bad reaction to a drug you took. Compazine (prochlorperazine) injection caused uncontrollable arm tremor in me. I had to ride it out as it was during a C-section. Oculogyric crisis that you had would have scared the hell out of me.

    I believe I have had a mast cell disorder since I was a teenager. I have struggled with depression since then and I am now 57 years old. I was mis-diagnosed with Crohn’s disease for 15 years because they do not do special staining of mast cells during an Endoscopy or Colonoscopy.
    I was subjected to the biphalate coating of Asacol for 15 years.

    Biphalates cause hormone toxicity in laboratory mice. England banned Asacol sooner than the U.S. I was also subjected to Remicade infusion for the last 7 of those 15 years due to a flare-up of “Crohn’s disease”.
    Mastocytic Enterocolitis mimics Crohn’s disease. I recently got tested and slides made of 4 areas of the GI tract. There was no sign of Crohn’s disease. The 4 areas showed mast cells with the CD markers 117,2 &25. If I was in GI distress, this would be called Mastocytic Enterocolitis. I take Pepcid 20 mg twice a day every day along with Zyrtec 10 mg twice a day every day. The histamine 2 blocker augments the histamine 1 blocker. For example, Doctors added Ranitidine IV to my first anaphylaxis to a fire-ant bite along with 1 gm of Solu-Medrol(a steroid) and Benadryl injection.

    Remicade can cause cancers and funky stuff with your immune system. Remicade can make you turn positive for the ANA test and the double stranded DNA antibody test The most research done on Remicade side effects are in Rheumatoid Arthritis.

    Love the one you’re with. Marley

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    1. bertieandme Post author

      Gosh Marley you’ve been on a difficult journey – *hugs*. I feel for you with the sibling situation – my step-brother openly said he “doesn’t do illness” and told me ages ago he had no intention of caring for his own Dad (my step-Dad) when he got old. I said to my Mum just the other day that I hope my step-brother has a stroke and is left totally dependent on others for care and gets treated like crap, it’s all he deserves when my step-Dad was a really supportive and loving father towards him.

      I think your story of being mis-diagnosed is sadly all too familiar to many of us with both mast cell disease and Ehlers-Danlos. I’ve lost count of the times over the years I was told I was “attention seeking” or “depressed” or “anxious” or “obviously had a low pain threshold” and other such crap (even when I actually had a structual spinal issue and needed surgery as a child). I wish Doctors were made more aware the impact they have on their patients’ mental well being.

      I understand your apprehension at taking the Gastrocrom – I’ve had a prescription now for 8 months and am still too terrified to try it! Good luck with your results – I’ve heard great things about Dr Castells so at least you’re in good hands.

      Jak x

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        1. Marley

          I decided to be brave and started my Gastrocrom. I taper up to 200 mg 4 times a day on an empty stomach over 8 weeks. Dr. Castells said that I should dilute it in a clear liquid like Apple juice. At first I felt a bit of nausea but that wore off. I taste the plastic the liquid comes in. I wonder if the plastic is safe or if I’m going to hear bad things about it down the road. My husband has noticed a change for the better in my concentration. Thanks for your kind comment. Marley

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            1. kneillbc

              I’ve asked my doc for it … Again. At one point one of the specialists was willing to prescribe it for me, but he seems to have either forgotten his previous agreement, or has simply forgotten. Fingers crossed! I’m very eager to know how you two do with it!

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              1. Elizabeth Milo

                I took 1/3 of an ampule yesterday. I’m working up to 8 a day! I will give this one month and see how I do. I hate being on Rx drugs and my insurance didn’t cover it, so it’ll have to be a miraculous change… 🙂

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  4. d

    Jak

    I think you are very brave to share your personal feelings on chronic illness. You can’t help but feel vulnerable. I truly appreciate these posts because I often am feeling, or have felt, the same thing and it makes me feel less alone knowing I am not the only one going through the roller coaster that is invisible chronic illness.

    I also have good friends that I only see sporadically. Everyone is busy with their lives, including me when I am feeling well. It’s hard to take a moment and set aside time… you always think, oh I can catch up another time. Most times though, that time doesn’t seem to appear. Add into the mix that you also need to schedule around all the unpredictabilities of illness (or not schedule, as I tend to opt out because I think I won’t be up to it) and trying to get some time with friends seems impossible.

    I also wonder if the distancing of friends also has to do with a kind of “wellness guilt”. They cannot identify with what chronic illness involves, but they know that your life is seriously limited. Do they then feel bad about sharing about their lives, like it will somehow make you feel worse about yours? So they don’t communicate as much as they might. Kind of like your step-brother – many people “don’t do illness” on varying levels.

    I agree that making friends in adulthood is challenging. Most people seem to have their circle and they are not particularly interested in expanding it. I feel for you and the possibility of the loss of your closest friend, your mom. Heartbreaking on more than one level. I will say that friends sometimes come in strange packages. Through classes I was taking before becoming ill, I met people who became my friends, whom I would never have thought of as possible friends. They are much older and some are retired. They have become good friends, and because they are retired, their schedules are very flexible : ). I don’t suppose there is a miniature schnauzer fanciers group in your area? : )

    Aside from the physical manifestations of illness, I believe feeling alone is the greatest challenge. Thanks for continuing to post, as it is a bright light for me.

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    1. bertieandme Post author

      Thanks for a lovely comment d as always 🙂 Too tired to write any more today, as have been back to the hospital again today with my Dad to have a scan for his hernia, but really appreciate you taking the time to write. Hugs Jak x

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  5. kneillbc

    Jak! I’m so sorry that you are feeling lonely and vulnerable. I am deeply grateful that I have my family and friends around me.

    I agree that making friendships is hard. I think it’s the same as with partner relationships- when your lifestyle is so different, it’s difficult to find others like yourself.

    I think I might point out one thing- you are making new friends right now. You’ve had several people read your post, and felt their heat parts ache for you, and written you back. THIS is your solution. It’s in front of your nose, and happening right now!

    You said it yourself- it’s hard to make new friends when you can’t go out and DO stuff. Well, it’s the same for others with chronic illness, right? Friendships needn’t be with people in the next town or next, friendships can so easily be across distance and time- especially with things like FaceTime and Skype.

    I think you may just have solved your own problem! They say find friends with similar interests- well, WE’RE all here, and I, for one, would like to be your friend. (And I can tell from the comments I’m not the only one!)

    Of course, nobody will EVER replace your Mom. My Mom passed away almost a year ago, and I still can’t think of it without tears. I was not as involved in my moms care (I live across the country), but I spoke with her every day, and she was my foundation. I wasn’t sure what I’d do. But, I’m managing, and even laughing and happy sometimes. I’m sure the fear of loosing her is feirce, but you will find a way when that time comes. In the meantime, there is nothing you can do about it. You will never replace her! or even begin to fill the void that it leaves. What you can do is fill up your life so that when that time comes the rest of your life doesn’t feel so empty, and you have people standing around you so that you couldn’t fall if you tried (Hell- it’d be nice to at least have enough people in that circle that if you fell over someone would notice!). You’re doing that now- reaching out. Just like kids on the playground- sometimes adults are terrible at saying “Will you be my friend?” It’s incredibly brave of you.

    Take care of yourself. I haven’t read your next entry on the root canal- I’m dreading it, I’m sure the surgeon was his typical surgeon self.

    Ciao!

    Karen

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    1. bertieandme Post author

      Thanks for the comment Karen – really sorry to hear you lost your Mum so recently. I feel like I’m gearing myself up to it and trying to get my head round it, so that when it happens I won’t be a complete gibbering wreck.

      I appreciate so much everyone’s offers of email friendship – I already have several sick friends I’ve have for many years who I keep in touch with that way. And while it’s lovely to hear from them now and again when they feel up to it I guess being selfish it would be nice to meet someone who at least lives in the same county as me whose life I could become more involved in. There is a local camera club I’ve wanted to join for ages, but it’s a struggle financially, plus I have to be well on a certain day every week to go (which is impossible), and they go on field trips which involves far too much walking for me – I might still get in touch though and see if I can just join in now and again as at least the people I met there would share one of my passions.

      I’m a very practical person and think there’s a solution to every problem – it’s just a matter of thinking outside the box and finding it! Jak x

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      1. d

        I think the camera club is a fantastic idea. Doesn’t hurt to ask! They may also do things that you are not aware of that you would be able to join in.

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  6. Dead Men Don't Snore

    I too find the social isolation the hardest part of dealing with this illness. I cope day to day by focussing on doing the small tasks I can do and trying not to dwell on how few people I see or how hard it is when largely housebound to meet new people, but every now and then I have a day when I can’t ignore the loneliness and the pain of it seems almost physical. The thought of losing your mother too must be untterly unbearable. I have no advice to offer but I really hope you find away to develop new and quality friendships.

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    1. bertieandme Post author

      I agree the loneliness can feel like an actual physical pain some days 😦 I think there are a lot of lonely healthy people around these days, but the problem is much worse when you are ill and can’t join groups or clubs or take part in hobbies to meet new people. The area where I live is full of married farmers and old people, which doesn’t help the situation either! Hugs x

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